Education About Disabilities/Diagnoses

Provide Feedback

Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, visible differences, and mental health and mental illness. Includes information for individuals and families with these conditions, as well as information to help others experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (Adapted from AIRS PH-6200.1850 Disability Awareness Programs )

375 East 100 South, 1st Floor
Salt Lake City, UT 84111
Phone: 801-493-4700
Address:
375 East 100 South, 1st Floor
Salt Lake City, UT 84111
Phone: 801-493-4700
Toll Free Phone: 800-227-2345
Fax: 801-483-1558
Email: cidne.christensen@cancer.org
Wheelchair Access: Complete
Eligibility: Individuals with a cancer diagnosis, their family and friends.
Services Provided:

Nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, diminishing suffering from cancer through research, education, advocacy, and service. Also assists in hair prosthetics referrals.

  • Voluntary Health Organizations
  • Smoking/Vaping Cessation
  • Health/Disability Related Support Groups
  • Disease/Disability Information
  • Health/Disabilities Related Volunteer Opportunities
  • Non-Emergency Medical Transportation
  • Court Community Service Sites
Source: United Way 2-1-1
Last Updated: 11/5/2020
780 South Guardsman Way
c/o The Carmen B. Pingree Center
Salt Lake City, UT 84108
Phone: 801-272-1051
Address:
780 South Guardsman Way
c/o The Carmen B. Pingree Center
Salt Lake City, UT 84108
Phone: 801-272-1051
Email: autismcouncilofutah@gmail.com
Eligibility: Open to all. No membership fees.
Services Provided: An independent council working to foster collaboration, communication, and learning among families and agencies, aiming to promote access to resources and responsible information for individuals of all ages who have, or are affected by autism, or related conditions.

  • Disease/Disability Information
  • Health Related Advocacy Groups
  • Specialized Information and Referral
Provider Profiles:

Internet resources, use search to find local resources.

Supporting International Meeting for Autism Research (IMFAR)

Source: United Way 2-1-1
Last Updated: 11/10/2020
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Address:
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Fax: 866-290-5206
Services Provided:

Support group for Fatty Oxidation Disorders. Raises funds for Educational and Networking Services and Programs. Medical information, including information about newborn screening, and support resources.

Source: MHP-Nationwide
Last Updated: 8/19/2020
42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Address:
42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Fax: 718-279-9596
Email: support@tourette.org
Services Provided:

A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

Find a Provider: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

Tourette Syndrome Centers of Excellence: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

Source: MHP-Nationwide
Last Updated: 8/18/2020
850 South 1700 West
Snow Springs Elementary School, trailer, southeast side
Lehi, UT 84043
Phone: 801-221-9930
Organization Name: Kids On the Move - Orem
(Show others in Organization)
Address:
850 South 1700 West
Snow Springs Elementary School, trailer, southeast side
Lehi, UT 84043
Phone: 801-221-9930
Fax: 801-221-0649
Email: kids@kotm.org
Eligibility: Serves low-income families who reside in Utah County with children under 3 years old with special needs.
Services Provided: Kids on the Move's Utah Respite Care Nights. This lovely little space is perfect for children with special needs and has a playroom and a sensory room. When the weather is nice volunteers and kids can go outside and play on Snow Springs Elementary's playground. All cases go though main intake at Orem.
Source: Medical Home Portal
Last Updated: 9/30/2019
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Address:
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Toll Free Phone: 800-421-8453
Fax: 410-528-1495
Email: admin@sicklecelldisease.org
Services Provided: National nonprofit with chapters in multiple states. Supports research, public health education, professional health education, patient services, community services, and global organizations.
Provider Profiles: Mission: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Organization Name: Intermountain Primary Children's Hospital/ University of Utah Health
(Show others in Organization)
Address:
81 North Mario Capecchi Drive
Primary Children's Hospital
Salt Lake City, UT 84113
Phone: 801-213-3599
Fax: 801-587-7539
Wheelchair Access: Complete
Eligibility: Young patients with Cystic Fibrosis or presumed diagnosis desiring confirmation. Accepts private insurance, Medicaid, and private pay. Contact for current information.
Services Provided: A multidisciplinary center that specializes in the coordinated care and treatment of cystic fibrosis. Supports patients and families in the hospital and in outpatient clinic from the time of diagnosis through transitioning to adult care.
Provider Profiles: For appointments or referrals, call 801 213-3599 and choose option #1, then ask to speak with the Referral Team. This will give you the most comprehensive and coordinated experience.
Source: United Way 2-1-1
Last Updated: 5/28/2020
Organization Name: Utah State Division of Rehabilitation - Administration
(Show others in Organization)
Address:
250 North 1950 West Ste B
Salt Lake City, UT 84116
Phone: 801-323-4343
TDD: 801-323-4395
Toll Free Phone: 800-284-1823
Fax: 801-323-4396
Wheelchair Access: Complete
Eligibility: Children and adults who are blind or have significant visual impairments. Utah.
Services Provided: Services for Children: braille and reading instruction, instruction in braille.
Preschool Programs: Maintains vision screening clinics for preschool and kindergarten children throughout the state.
Provides programs to help meet the needs of Utah citizens who are blind or have significant visual impairments including vocational rehabilitation, training, adjustment services, preschool vision screening, services to individuals who are both deaf and blind; and Independent Living services to older blind Utahns.
Provider Profiles: Other locations in Ogden, Provo, St. George.
Renamed Utah State Division of Rehabilitation Services
Source: Medical Home Portal
Last Updated: 10/25/2018
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Address:
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Fax: 847-434-8000
Services Provided: Professional association dedicated to the health, safety, and well-being of all infants, children, adolescents, and young adults.
Source: MHP-Nationwide
Last Updated: 1/10/2020
Address:
6801 Washington Ave S, Suite 200
Minneapolis, MN 55349
Phone: 866-354-3254
Toll Free Phone: 800-328-8602
Fax: 952-828-6900
Email: info@starkeyfoundation.org
Eligibility: Based on income and assets
Services Provided: Starkey Hearing Foundation uses the gift of hearing to reflect caring and sharing and improve the lives of individuals, families and communities.

  • Hearing Aids
Source: Nationwide Suggest Providers Queue
Last Updated: 11/6/2020
Address:
375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Fax: 856-661-9797
Email: MSquestions@mymsaa.org
Eligibility: Individuals with MS
Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application
Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Address:
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Fax: 213-749-1651
Eligibility: Infants and preschool children with hearing loss.
Services Provided: A leading diagnostic and education center for young children with hearing loss. It provides free, parent-centered services. The Clinic offers worldwide family services, local family services, professional education, preschool, and hearing testing. The Clinic has over 60 years of expertise in the spoken language option, called "oralism," serving 25,000 families each year.

Hearing Screening
Parent Support Groups
Preschools
Online courses
Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
Organization Name: Utah Department of Health
(Show others in Organization)
Address:
288 North 1460 West
PO Box 142107
Salt Lake City, UT 84114-2107
Phone: 801-538-6894
Fax: 801-538-9495
Wheelchair Access: Complete
Languages Spoken: Spanish
Eligibility: No charge, no health insurance required
Services Provided: Provides comprehensive asthma care by ensuring availability of and access to guidelines-based medical management and pharmacotherapy for all Utahns with asthma, and to link those with poorly controlled asthma to individualized services.
Utah Asthma Home Visiting Program for individuals with asthma living in Salt Lake and Utah Counties.
Prescription Assistance Program for Patients with Asthma http://health.utah.gov/asthma/basics/rxassist.html
Provider Profiles: Nichole Shepard, MPH - Program Manager
Kellie Baxter, Health Program Specialist
Holly Uphold, PhD - Epidemiologist
Janae Letterman, BS CHES - Program Coordinator
Source: Medical Home Portal
Last Updated: 1/8/2020
Address:
PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Fax: 804-744-9388
Email: psiops@uneedpsi.org
Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses.
Services Provided: Provides online disease and treatment information as well as financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and co-payments. Financial support and guidance available for qualified patients with specific, rare chronic diseases.

  • Medical Care Expense Assistance
  • Specialized Information and Referral
Provider Profiles:

Online resources

Source: MHP-Nationwide
Last Updated: 10/30/2020
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Email: healthinfo@niddk.nih.gov
Eligibility: Contact for specific information.
Services Provided:

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
6337 South Highland Drive Ste 336
Mountain America Credit Union Bldg
Holladay, UT 84121
Phone: 801-254-5524
Address:
6337 South Highland Drive Ste 336
Mountain America Credit Union Bldg
Holladay, UT 84121
Phone: 801-254-5524
Fax: 801-733-4857
Email: info@komenutah.org
Eligibility: No restrictions, breast cancer
Services Provided: Seeks to improve breast cancer survivorship and prevention through screening, treatment, research, special events, advocacy, and support services. Also provides funding for organizations that aim to fill the gaps in care for women as they relate to breast cancer. Grants are for screening, treatment, treatment support, and education.

  • Disease/Disability Information
  • Specialized Information and Referral
Source: United Way 2-1-1
Last Updated: 11/3/2020
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Eligibility: communication disorders
Services Provided:

Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Source: MHP-Nationwide
Last Updated: 9/18/2020
455 East 500 South Ste 308
Salt Lake City, UT 84111
Phone: 801-532-2335
Address:
455 East 500 South Ste 308
Salt Lake City, UT 84111
Phone: 801-532-2335
Fax: 801-364-0237
Email: utah@cff.org
Eligibility: Cystic Fibrosis patients, their families and care team
Services Provided: Funds research and supports the development of new drugs to fight Cystic Fibrosis to improve the quality of life for those with this condition to ultimately find a cure.

  • Disease/Disability Information
  • Health/Disabilities Related Volunteer Opportunities
  • Voluntary Health Organizations
Source: United Way 2-1-1
Last Updated: 11/3/2020
Organization Name: NAMI Utah
(Show others in Organization)
Address:
3471 South West Temple
Salt Lake City, UT 84115
Phone: 801-935-4447
Eligibility: Individuals with behavioral health issues and their families
Services Provided: Latino Behavioral Health Services is a peer-run, community based nonprofit that provides support and educational programs at no cost. Enhances the awareness and well-being of people with mental illness, their caregivers and loved ones through support, education, empowerment, facilitation of resources and services with responsiveness to cultural, socioeconomic and linguistics characteristics. LBHS programs are offered at low or no cost.
Source: United Way 2-1-1
Last Updated: 11/26/2019
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Address:
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Wheelchair Access: Ramps
Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
Organization Name: Intermountain Healthcare
(Show others in Organization)
Address:
1380 East Medical Center Drive
St. George, UT 84790
Phone: 435-251-1000
Services Provided: Provides inpatient, outpatient, and emergency medical care.

  • Chronic Disease Self Management Programs
  • Emergency Room Care
  • Pregnancy/Childbirth Support Groups
  • Hospitals
  • Inpatient Mental Health Facilities
  • Disease/Disability Information
  • Safe Havens for Abandoned Newborns
  • Health/Disability Related Support Groups
  • Bereavement Support Groups
Source: United Way 2-1-1
Last Updated: 11/16/2020
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Address:
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Fax: 414-276-2146
Email: info@aacpdm.org
Services Provided:

A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

AACPDM Medical Professional Directory offers patients and families the option to search for members by locations, specialty and/or patient type.

The website also offers continuing education for professionals and educational resources for individuals and families.

Source: MHP-Nationwide
Last Updated: 6/8/2020
59 South 1100 East
Salt Lake City, UT 84106
Phone: 801-236-2294
Address:
59 South 1100 East
Salt Lake City, UT 84106
Phone: 801-236-2294
Fax: 801-530-1074
Wheelchair Access: Entry and Bathroom(s)
Eligibility: Children ages 6-12, teens, and adults, cancer
Services Provided: Programs at the Cancer Wellness House focus on three areas, which are emotional and spiritual support, mind and body wellness, and social and community leadership. All 30+ programs are at no-cost, and are facilitated by a professional, all volunteer, wellness team. The home-like setting offers a warm and comforting space to retreat from the burden of cancer and improve quality of life.
Source: United Way 2-1-1
Last Updated: 1/8/2020
5320 South 900 East Suite 100
Salt Lake City, UT 84107
Phone: 844-571-4357
Address:
5320 South 900 East Suite 100
Salt Lake City, UT 84107
Phone: 844-571-4357
Toll Free Phone: 888-391-9389
Fax: 801-536-0991
Email: info.utid@arthritis.org
Eligibility: Individuals, family, and healthcare providers for those affected with arthritis. Utah and Idaho.
Services Provided: Offers information and tools to help people live a better life with arthritis.

  • Health Care Referrals
  • Disease/Disability Information
  • Voluntary Health Organizations
  • Advocacy
  • Chronic Disease Self Management Programs
Provider Profiles:

Internet Resources

Source: United Way 2-1-1
Last Updated: 11/4/2020
Address:
Salt Lake City, UT
Eligibility: Graduate level training, five states include Utah, Idaho, Montana, Wyoming and North Dakota.
Services Provided:

Utah Regional LEND is a training program that covers five states and uses state-of-the-art technology to connect groups of trainees across partner states. Professionals are trained to move beyond discipline boundaries to provide optimal services to child and adolescents with special health care needs. Because families are essential to well-being, this program emphasizes the role of family-centered care in all we do.

Provider Profiles:

Five states include Utah, Idaho, Montana, Wyoming and North Dakota.

Source: Medical Home Portal
Last Updated: 11/16/2020
Organization Name: NAMI Utah
(Show others in Organization)
Address:
90 East 200 North
Logan, UT 84321
Phone: 435-787-4165
Email: 1namicachevalley@gmail.com
Eligibility: No cost. Individuals living with mental illness and their families.
Services Provided:

Offers free support groups and education for anyone impacted by mental health conditions throughout Utah – including those with mental health conditions and their family members or loved ones. 

Source: United Way 2-1-1
Last Updated: 9/22/2020
Address:
1408 South 1100 East
Salt Lake City, UT 84105
Phone: 800-865-5004
Toll Free Phone: 800-FON-AIDS
Fax: 801-486-3978
Email: mail@utahaids.org
Wheelchair Access: Entry and Bathroom(s)
Eligibility: Case managers will refer clients to statewide locations of HIV testing, resource referrals to physicians, attorneys, dentists, mental health professionals, and medical services; limited crisis intervention; mailings of AIDS-related materials.
Services Provided: Offers assistance and expertise to anyone struggling with the complex issues that surround HIV. Works with community members to form partnerships that mend health, promote compassion, and extend companionship to everyone who has been affected by HIV. Also aims to reduce new occurrences of HIV and Sexually Transmitted Infections in the community through prevention, education, and outreach services.

  • Public Awareness/Education
  • Sexually Transmitted Disease Treatment
  • AIDS/HIV Prevention Counseling
  • Health/Disability Related Support Groups
  • HIV Testing
  • Disease/Disability Information
  • Health Care Referrals
  • Navigator Programs
  • Food Pantries
Source: United Way 2-1-1
Last Updated: 11/20/2020
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Email: 2020@nei.nih.gov
Services Provided:

National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision

Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Address:
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Toll Free Phone: 888-242-2453
Services Provided: Information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

The [https://www.heart.org/en/ American Stroke Association] is a division of the American Heart Association focused on stroke prevention and treatment.
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Address:
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Toll Free Phone: 800-714-5437
Fax: 201-250-8435
Email: info@parentprojectmd.org
Services Provided: Information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.
Source: MHP-Nationwide
Last Updated: 5/9/2019
CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)
Address:
CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Services Provided: Enhances the lives of children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families. About 275 researchers, implementation and technical assistance specialists, staff, and students work on more than 75 projects related to developmental disabilities; early care and education; physical and social health; professional development, technical assistance, and implementation science; public policy and evaluation; and racial, ethnic, linguistic, cultural, and socioeconomic diversity.
Source: Medical Home Portal
Last Updated: 1/10/2019
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Address:
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Toll Free Phone: 866-303-2279
Email: info@fabry.org
Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.
Source: MHP-Nationwide
Last Updated: 1/31/2020
132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 801-530-0660
Address:
132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 801-530-0660
Toll Free Phone: 800-533-2873
Fax: 801-530-0670
Eligibility: None
Services Provided: The leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is the largest charitable supporter of T1D research.
Source: United Way 2-1-1
Last Updated: 1/7/2020
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-556-9222
Organization Name: Pediatric Endocrine Society (PES)
(Show others in Organization)
Address:
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-556-9222
Fax: 703-556-8729
Email: info@pedsendo.org
Services Provided:

Offers a variety of clinical and patient resources as well as educational events for clinicians.

Find a Pediatric Endocrinologist: Search the Pediatric Endocrine Society membership list.

Upcoming Camps: Directory of specialty camps for kids, including Diabetes Camps, Turner Syndrome Camps, and Transgender Youth and Teen Camps. Not run or endorsed by the Pediatric Endocrine Society.

Source: MHP-Nationwide
Last Updated: 9/14/2020
Address:
1963 McCraren Rd.
Highland Park, IL 60035
Toll Free Phone: 877-720-2192
Email: paf@pafoundation.com
Services Provided:

Mission: Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Organization offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Organization Name: Centers for Disease Control and Prevention
(Show others in Organization)
Address:
1600 Clifton Road
Atlanta, GA 30329
Phone: 800-232-4636
TDD: 888-232-6348
Toll Free Phone: 800-232-4636
Eligibility: Open to the public.
Services Provided:

Information provided on more than 750 health topics, including travel immunizations, disease outbreaks, natural disasters, and other emergencies

Source: MHP-Nationwide
Last Updated: 10/30/2020
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Address:
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Email: info@genetic.org
Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
Address:
4516 South 700 East, Suite 160
Murray, UT 84107
Phone: 801-883-9669
Email: utah@efa.org
Wheelchair Access: Complete
Eligibility: Epilepsy patients and their families.
Services Provided:

Provides awareness, education, support services, and advocacy for and in behalf of all those dealing with the many challenges of epilepsy/seizure disorders.

  • Non-Emergency Medical Transportation
  • Health/Disability Related Support Groups
  • Therapeutic Camps
  • Health Related Advocacy Groups
  • Voluntary Health Organizations
  • Health/Disabilities Related Volunteer Opportunities
  • Independent Living Skills Instruction
  • Disease/Disability Information
  • Prescription Drugs for Specific Health Conditions
Source: United Way 2-1-1
Last Updated: 11/24/2020
772 East 3300 South, Suite 210
Salt Lake City, UT 84106
Phone: 801-484-0325
Address:
772 East 3300 South, Suite 210
Salt Lake City, UT 84106
Phone: 801-484-0325
Toll Free Phone: 877-463-6893
Fax: 801-746-2488
Services Provided:

Provides education, advocacy, outreach, and networking for people with bleeding disorders. These services empower individuals with bleeding disorders and their families to lead healthier and more self-sufficient lives.

Source: Medical Home Portal
Last Updated: 8/26/2020
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Address:
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Fax: 801-359-7404
Email: support@batemanhornecenter.org
Wheelchair Access: Complete
Eligibility: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and other related illnesses. Must have a primary care provider and complete an application.
Services Provided: Leading the way in the medical advancement and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), BHC been committed to the education of medical providers for more than 25 years.

Engages in research and provides treatment. Educational Resources available for providers and patients.

Contact Information:
Clinic Phone: (801) 359-7400
Research Phone: (801) 532-8311
Research Fax: (801) 364-3528
Clinic Fax: (801) 359-7404
Source: Nationwide Suggest Providers Queue
Last Updated: 4/17/2020
Organization Name: Midtown Community Health Centers
(Show others in Organization)
Address:
2240 Adams Avenue
Ogden, UT 84403
Phone: 801-393-5355
Fax: 801-394-4609
Wheelchair Access: Complete
Eligibility: Open to all
Services Provided: Health care coordination, case management, and prescription assistance for uninsured children, families, and adults including health education and specialty care coordination available at every Midtown Community Health Clinic location from Salt Lake City to Logan. Enrollment Specialist also available by appointment to help with navigation of Medicaid, CHIP, PCN, UPP, and Marketplace plans (ObamaCare).
Source: Medical Home Portal
Last Updated: 11/8/2017
Address:
729 South Arapeen Drive
Salt Lake City, UT 84108
Phone: 801-585-2354
Fax: 801-587-8381
Email: rebecca.starks@hsc.utah.edu
Eligibility: People with Parkinson's disease, family, and caregivers.
Services Provided: Helps run Parkinson Disease support groups in the state, holds educational seminars, and coordinates fund-raising events.
Source: United Way 2-1-1
Last Updated: 12/2/2019
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Address:
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Toll Free Phone: 800-634-8978
Eligibility: People with tinnitus, their families and health care professionals, and the public.
Services Provided:

The American Tinnitus Association (ATA) is the national champion of tinnitus awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
Matt's Place View on Map
Address:
190 South Main Street, Suite B
Bamberger Professional Office Building
Centerville, UT 84014
Phone: 801-614-8400
Fax: 801-614-8300
Email: info@mattsplace.org
Eligibility: Assists families and individuals ages 3-21. Accepts private pay, insurance, Medicaid. Contact for current information.
Services Provided: Helps families and individuals ages 5 to 18, with behavioral disorders and who are on the autism spectrum, in a day treatment setting, intensive outpatient program, social skills groups, outpatient medication management, outpatient therapy, or occupational therapy.

  • Mental Health Evaluation
  • Infant and Early Childhood Mental Health
  • Mental Health Information/Education
  • Disability Related Parenting Programs
  • Behavioral Learning Therapy
  • Social Skills Training
Provider Profiles:

Reception hours: M - F 8 - 5 pm
Program hours: T - F 8 - 5 pm

Mary Burris, M.D., Medical Director

See website or contact for additional provider names and specialties. All providers may not provide all services

Source: United Way 2-1-1
Last Updated: 10/23/2020
729 Arapeen Drive, U of U Imaging and Neurosciences Ctr
Salt Lake City, UT 84108
Phone: 877-740-4372
Address:
729 Arapeen Drive, U of U Imaging and Neurosciences Ctr
Salt Lake City, UT 84108
Phone: 877-740-4372
Eligibility: People who suffer Huntington’s Disease or a relative
Services Provided: Disseminate information about Huntington's Disease to patients, caregivers, physicians, nursing homes etc, to provide support to people concerned with Huntington's Disease.
Source: United Way 2-1-1
Last Updated: 6/11/2019
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Address:
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Toll Free Phone: 800-386-8233
Fax: 626-578-0823
Email: info@nucdf.org
Services Provided:

The goals of the National Urea Cycle Disorders Foundation (NUCDF) are:

  • To provide guidance and information to families and others affected by urea cycle disorders.    
  • To create a caring community, networking families together for support.    
  • To educate healthcare professionals on the identification, diagnosis and treatment of UCD.      
  • To stimulate and support research which leads to improved quality of life for today and a CURE for tomorrow.    
  • To increase public awareness on the existence of UCDs so that no child or adult ever goes undiagnosed.    
  • To educate legislators on the needs of children, adults and families affected by these rare disorders.
Source: MHP-Nationwide
Last Updated: 8/19/2020
Address:
352 South Denver Street Ste 101
Salt Lake City, UT 84111
Phone: 801-364-0366
Toll Free Phone: 800-657-6398
Email: info@utahlupus.org
Eligibility: No restrictions
Services Provided: Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.

  • Disease/Disability Information
  • Prescription Expense Assistance
  • Health/Disability Related Support Groups
  • Voluntary Health Organizations
Source: United Way 2-1-1
Last Updated: 10/14/2020
JDRF View on Map
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Address:
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Fax: 212-785-9595
Email: info@jdrf.org
Services Provided: JDRF's (formerly Juvenile Diabetes Research Foundation) primary objective is to fund research into Type 1 diabetes.
Also provides:
•Informational Guides
•Virtual community
•Local chapters
•Fundraising and social events
Source: Nationwide Suggest Providers Queue
Last Updated: 1/3/2020
Address:
1750 West Research Way (2770 South) Suite 102
West Valley City, UT 84119
Phone: 801-487-4143
Toll Free Phone: 801-487-4145
Fax: 801-487-4145
Email: info@cuutah.org
Wheelchair Access: Complete
Eligibility: Serves the underrepresented Latino population
Services Provided:

Provides a variety of programs focusing on both community well-being and community organizing to help individuals from the immigrant and refugee communities become healthy, self-reliant, and participatory members of society.

  • Mobile Health Care
  • Community Involvement Programs
  • Specialized Information and Referral
  • Diabetes Screening
  • Cholesterol/Triglycerides Tests
  • HIV Testing
  • Food Stamps/SNAP Applications
  • Disease/Disability Information
  • Immigrant Benefits Assistance
  • Wellness Programs
  • Blood Pressure Screening
  • Health/Disabilities Related Volunteer Opportunities
  • Comprehensive Immigration/Naturalization Services
Source: United Way 2-1-1
Last Updated: 11/12/2020
Address:
2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
Fax: 202-349-1156
Email: info@lupus.org
Services Provided:

Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Chapter Finder: Find support and connection in your community.

Source: MHP-Nationwide
Last Updated: 10/30/2020
PO Box 712043
Salt Lake City, UT 84171
Phone: 385-645-4626
Address:
PO Box 712043
Salt Lake City, UT 84171
Phone: 385-645-4626
Email: info@needsbeyondmedicine.org
Eligibility: Patients must be 18 years and older, reside in Utah, and currently receiving cancer treatment.
Services Provided:

Provides financial assistance grants for patients currently receiving cancer treatment, as well as online educational materials/workshops for the public. Financial assistance is for non-medical expenses, such as, transportation, rent, and other living costs. Does not provide medical advice, diagnosis, or treatment.

  • Disease/Disability Information
  • Incidental Medical Expense Assistance
Source: United Way 2-1-1
Last Updated: 11/11/2020
Address:
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Fax: 203-263-9938
Languages Spoken: Spanish
Eligibility: Persons with a rare disease, financial need.
Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Source: MHP-Nationwide
Last Updated: 9/12/2019
Address:
4516 South 700 East Ste 160
Salt Lake City, UT 84107
Phone: 801-883-9669
Toll Free Phone: 800-332-1000
Fax: 301-459-1569
Email: utah@efa.org
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided:

Provides information, advocacy, support groups, transportation directions, local and national advocacy, Kids Crew, Camp Discovery, Art Program, and Walk to End Epilepsy. Free educational materials in English and Spanish.

COVID-19 UPDATE: Services provided via phone and virtual groups.

  • Disease/Disability Information
  • Voluntary Health Organizations
  • Internet Information Resources
  • Specialized Information and Referral
Source: United Way 2-1-1
Last Updated: 11/3/2020
Address:
5280 South Commerce Drive Ste E-140
Salt Lake City, UT 84107
Phone: 801-265-1111
Fax: 801-262-2837
Email: info@alliance-community.org
Eligibility: Walk in or call for information. Visite en persona o Llame para informacion
Services Provided:

A consulting organization that provides diversity services, promotes cultural awareness, advocacy, education, and communication about issues that affect the Hispanic/Latino communities.

Organizacion sin fines de lucro 501(c )(3) que prove servicios a poblaciones diversas, promueve conciencia cultural, abogacia, y comunicacion sobre cuestiones afectando a comunidades de minorias etnicas.

  • Nutrition Education
  • Citizenship Education
  • Chronic Disease Self Management Programs
  • Cultural Awareness/Competencies Training
  • Diabetes Management Clinics
  • Focus Group Facilitation
  • Ethnic Advocacy Groups
  • Language Translation
  • Language Interpretation
  • Leadership Development
  • Networking/Relationship Building Support
  • Health/Disability Related Support Groups
  • Immigrant Visa Application Filing Assistance
  • Workplace Safety Education
  • Disease/Disability Information
Source: United Way 2-1-1
Last Updated: 11/11/2020
Address:
Salt Lake City, UT
Phone: 801-360-4666
Email: liftinghearts2011@gmail.com
Eligibility: Women affected by breast cancer. Utah County and Salt Lake County
Services Provided:

Provides one-on-one mentoring, monthly support meetings, retreats, service opportunities, and family activities all aimed at helping breast cancer survivors and their families heal.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
  • Specialized Information and Referral
  • Retreat Centers
Source: United Way 2-1-1
Last Updated: 11/11/2020
250 East 200 South Suite 1425
Salt Lake City, UT 84111
Phone: 801-585-2252
Organization Name: University of Utah Health
(Show others in Organization)
Address:
250 East 200 South Suite 1425
Salt Lake City, UT 84111
Phone: 801-585-2252
Email: project.echo@hsc.utah.euu
Eligibility: Providers and care professionals. No cost. Continuing Medical Education (CME) credits available.
Services Provided: Telementoring, a guided practice model where the participating clinician retains responsibility for managing the patient. Training community providers through HIPPA-compliant, technology-enabled collaborative learning to address specialty care-level health concerns in the primary care setting. Multi-disciplinary specialist teams use videoconferencing technology to conduct weekly or bi-weekly sessions with community providers to discuss specialized health care topics. Community providers present patient cases to determine the best treatment options.
Topics include pediatrics, behavioral health, burn and soft tissue injury, GI and liver care, hepatitis C virus, pregnancy care.
Provider Profiles: AKA TeleECHO
Source: Medical Home Portal
Last Updated: 4/14/2020
288 North 1460 West
PO Box 142107
Salt Lake City, UT 84114-2107
Phone: 385-468-5250
Organization Name: Utah Department of Health
(Show others in Organization)
Address:
288 North 1460 West
PO Box 142107
Salt Lake City, UT 84114-2107
Phone: 385-468-5250
Email: kabaxter@utah.gov
Languages Spoken: Spanish
Eligibility: For individuals with uncontrolled asthma living in Salt Lake and Utah Counties. No cost, no health insurance required.
Services Provided: The Utah Asthma Home Visiting Program will help families of children who have uncontrolled asthma. The program includes three visits and two phone calls and provides asthma self-management education, home trigger education and assessment, and trigger remediation referral. Providers can provide qualifying patients to the service, and patients desiring additional resources can self-refer as well.

In Salt Lake County, call: 385-468-4085
In Utah County, call: 801-851-7509
Provider Profiles: Salt Lake County Health Dept 385 468-4085 Britanny Parry
Utah County Health Dept 801 851-7509 Andrea Jensen
Kellie Baxter, Program Officer
Source: Medical Home Portal
Last Updated: 1/8/2020
Organization Name: Utah Parent Center
(Show others in Organization)
Address:
5296 Commerce Drive, Suite 302
Murray, UT 84107
Phone: 801-272-1068
Toll Free Phone: 800-468-1160
Fax: 801-272-8907
Email: info@utahfamilyvoices.org
Languages Spoken: Spanish
Eligibility: For Utah families with a child or youth with a physical, mental or developmental special need.
Services Provided:

Provides one-on-one help to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, they provide families with tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families and serve as a trusted resource on health care.

Provider Profiles:

Funded in part by the Maternal and Child Health Bureau.

Source: United Way 2-1-1
Last Updated: 9/16/2020
3838 South 700 East, Suite 100
Salt Lake City, UT 84106
Phone: 801-269-0231
Address:
3838 South 700 East, Suite 100
Salt Lake City, UT 84106
Phone: 801-269-0231
Fax: 801-269-0304
Eligibility: Cancer patients
Services Provided: Provides support to cancer patients and their families during diagnosis, treatment, and recovery and to enhance their quality of life throughout these stages of the cancer experience.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: United Way 2-1-1
Last Updated: 11/23/2020
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Address:
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Email: info@autism-society.org
Services Provided: We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.

Disability Awareness Programs
Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Address:
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Toll Free Phone: 800-992-9392
Fax: 901-761-0484
Email: jwarner@tn.stutteringhelp.org
Wheelchair Access: Not Applicable
Services Provided:

The Stuttering Foundation provides resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Free packets of informative brochures, referral lists for fluency specialists and a catalog of resources are available.

The Foundation publishes 30 books, 41 DVD videos and 26 brochures on stuttering. Over 800,000 publications are distributed each year to those who stutter, their families, speech language pathologists, pediatricians, family physicians, clinics, day care centers, libraries and others concerned with the problem of stuttering.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/30/2020
Address:
1950 Circle of Hope Drive (100 South)
Salt Lake City, UT 84112
Phone: 800-824-2073
Toll Free Phone: 800-824-2073
Fax: 801-587-9235
Email: patient.education@hci.utah.edu
Eligibility: Cancer patients and their families
Services Provided:

The Huntsman Cancer Institute and Hospital are part of the University of Utah Health Care system. Serves thousands of cancer patients throughout the Intermountain West every year and provides academic and clinical training for future physicians and researchers.

COVID-19 UPDATE: Many services are now available through virtual care. Visit website, call provider, or call the Covid-19 additional information line noted. Testing is available; temperature screening for anyone entering the hospital, centers, and clinics. Please stand 6 feet apart from others.

  • Health/Disability Related Support Groups
  • Disease/Disability Information
  • Medical Information Services
  • Hospitals
Source: United Way 2-1-1
Last Updated: 11/10/2020
Organization Name: NAMI Utah
(Show others in Organization)
Address:
PO Box 2265
St. George, UT 84771
Phone: 541-331-6979
Eligibility: People with mental illnesses as well as family members, no cost. Washington, Iron Counties.
Services Provided:

Offers free support groups and education for anyone impacted by mental health conditions throughout Utah – including those with mental health conditions and their family members or loved ones. 

Source: United Way 2-1-1
Last Updated: 9/22/2020
1424 East Foremaster Drive, Suite 120
St. George, UT 84790
Phone: 435-251-2888
Organization Name: Intermountain Healthcare
(Show others in Organization)
Address:
1424 East Foremaster Drive, Suite 120
St. George, UT 84790
Phone: 435-251-2888
Eligibility: Fee for group and individual instruction. Some insurance plans will cover diabetes education.
Services Provided: Offers diabetes education program to help participants learn to manage their condition.
Source: Medical Home Portal
Last Updated: 3/27/2020
Address:
110 West Road, Suite 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Email: frontdesk@primaryimmune.org
Eligibility: Individuals with primary immunodeficiency diseases and their families
Services Provided:

A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 10/30/2020
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Address:
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Toll Free Phone: 800-826-3632
Fax: 312-642-7243
Eligibility: Contact for specific information.
Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.
Provider Profiles: National
Source: MHP-Nationwide
Last Updated: 1/17/2020
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Address:
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Fax: 303-322-5550
Services Provided:

The SPD Foundation offers online courses, resources, advocacy, and support groups for professionals, parents, and others interested in helping individuals with Sensory Processing Disorder.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Address:
PO Box 7762
Wilmington, DE 19803
Services Provided:

The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Source: MHP-Nationwide
Last Updated: 10/28/2020
Address:
475 West 260 North
Orem, UT 84057
Phone: 801-221-9930
Fax: 801-221-0649
Email: kid@kotm.org
Eligibility: Children and adolescents with disabilities and developmental delays and/or come from low-income families. Most insurances, self-pay, and clergy-assisted pay.
Services Provided:

Supports the development of young children and families. All cases go through the Orem office. Consists of 6 core programs: Early Intervention, Early Head Start, Autism Center, Respite Care, and Child and Family Mental Health.

COVID-19 UPDATE: Center is closed. Appropriate contact info available on website.

  • Child Care Volunteer Opportunities
  • Early Head Start
  • Infant and Early Childhood Mental Health
  • Early Intervention for Children With Disabilities/Delays
  • Community Based Preschools
  • Autism Therapy
  • General Counseling Services
  • Family Counseling
  • Disease/Disability Information
  • Children's Out of Home Respite Care
  • Parenting Materials
Source: United Way 2-1-1
Last Updated: 10/12/2020
Organization Name: Intermountain Healthcare
(Show others in Organization)
Address:
652 South Medical Center Drive
St. George, UT 84790
Phone: 435-652-3890
Fax: 435-251-2255
Services Provided: Dixie Regional Medical Center (DRMC) full-service regional referral center serving the medical needs of Washington County and the tri-state area.

Health & Performance Center

###5 County###
Provider Profiles: Spirometry testing ages 5 and older 435 251-1650, asthma education 435 251-1653
Source: Medical Home Portal
Last Updated: 10/12/2017
Address:
85 North Medical Drive
Craig H. Neilsen Rehabilitation Hospital
Salt Lake City, UT 84158
Phone: 801-709-1420
Toll Free Phone: 800-281-8442
Fax: 801-716-4995
Email: info@biau.org
Wheelchair Access: Complete
Eligibility: Open to those who have had a brain injury. Bring a yoga mat.
Services Provided: Provides education and support through facilitation of resources for the issues of prevention and recovery of those affected by a brain injury in the state of Utah.BIAU also provides support to those transitioning back into everyday life such as work, school, and family relationships after a traumatic brain injury. Also provides low-cost helmets (see Disease/Disability Information service term for more info).

  • Disease/Disability Information
  • Voluntary Health Organizations
  • Health/Disability Related Support Groups
  • Health Related Advocacy Groups
  • Stroke Rehabilitation
Source: United Way 2-1-1
Last Updated: 10/28/2020
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Organization Name: University of Kansas
(Show others in Organization)
Address:
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Fax: 785-864-7605
Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.
Provider Profiles: Based at the University of Kansas.
Source: MHP-Nationwide
Last Updated: 1/6/2020
3920 South 1100 East Ste 240
Salt Lake City, UT 84124
Phone: 801-484-4456
Address:
3920 South 1100 East Ste 240
Salt Lake City, UT 84124
Phone: 801-484-4456
Toll Free Phone: 800-586-4872
Fax: 801-484-5461
Email: UTInfo@Lungs.org
Wheelchair Access: Not At All
Eligibility: School counselors, nurses, teachers, facilitators, etc.
Services Provided:

Offers practical help to people living with asthma, emphysema, and other lung diseases. Also confronts lung disease at the root level by educating children about the dangers of smoking, pushing for more smoke-free workplaces, and working to reduce air pollution.

Camp Wyatt is a week-long summer camp for kids with asthma ages 7-14.

Provider Profiles:

Live Well Breathe Well online education for adults with asthma

Source: United Way 2-1-1
Last Updated: 9/14/2020
295 Chipeta Way 2S1010
Division of General Pediatrics, Department of Pediatrics
Salt Lake City, UT 84108
Address:
295 Chipeta Way 2S1010
Division of General Pediatrics, Department of Pediatrics
Salt Lake City, UT 84108
Email: info@medicalhomeportal.org
Eligibility: Physicians and parents who care for children and youth with special health care needs.
Services Provided:

The Medical Home Portal is a unique source of reliable information about children and youth with special health care needs (CYSHCN), offering a "one-stop shop" for their families, physicians and Medical Home teams, other professionals and caregivers.

  • Specialized Information and Referral
  • Disease/Disability Information
  • Internet Information Resources
Source: United Way 2-1-1
Last Updated: 11/11/2020
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830
Address:
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830
Email: customerservices@additudemag.com
Services Provided: Online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.
Source: Nationwide Suggest Providers Queue
Last Updated: 4/14/2020
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
TDD: 888-480-3739
Fax: 301-315-2818
Eligibility: HIV/AIDS patients, their families and friends, health care providers and researchers.
Services Provided:

AIDS info is a U.S. Department of Health and Human Services (DHHS) project providing information on HIV/AIDS clinical trials and treatment. It is the result of merging two previous DHHS projects: The AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS).

AIDS info is a central resource for current information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection -- from patients who are HIV positive with no symptoms to those with various symptoms of AIDS.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Address:
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Email: info@hcunetworkamerica.org
Services Provided:

Resources, information, research information, and support for HCU.

Source: MHP-Nationwide
Last Updated: 8/19/2020
9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619
Address:
9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619
Eligibility: Any persons with interest in MSUD
Services Provided: The MSUD Family Support Group membership includes families and professionals worldwide.

The MSUD Family Support Group is dedicated to:
• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/24/2020
895 North 900 East
American Fork, UT 84003
Phone: 801-763-4008
Address:
895 North 900 East
American Fork, UT 84003
Phone: 801-763-4008
Fax: 801-763-4214
Eligibility: Anyone interested in the welfare of individuals and families who deal with mental disabilities and/or developmental disabilities.
Services Provided: 1. Establish and coordinate volunteer activities
2. Furnish information, referral, education, newsletters, conferences
3. Promote people-first concepts
4. Help families with guardianship information forms
Source: Medical Home Portal
Last Updated: 12/19/2019
Address:
P.O. Box 744
Farmington, NM 87499
Phone: 505-226-3073
Email: info@navajofamilies.org
Languages Spoken: English, Navajo
Eligibility: Families of children and youth with special needs on the Navajo Nation
Services Provided: Provides one-on-one help to families with children and youth with special health care needs and/or disabilities on the Navajo Nation. Builds partnerships among families, providers, schools, non-profits, and Diné extended families. ​​Provide direct services connecting families with resources and can help with legal information.
Provider Profiles: Staffed by family and traditional mentors, a Diné wellness coordinator, and a legal practitioner.
Source: Medical Home Portal
Last Updated: 4/15/2020
Organization Name: Utah Department of Health
(Show others in Organization)
Address:
Salt Lake City, UT
Services Provided: Health education programs, self-management workshops in the areas of asthma, alzheimer's and dementia, diabetes, fall prevention, arthritis and exercise, pain management, prediabetes, health screenings, and way to quit (tobacco).
Source: Medical Home Portal
Last Updated: 11/5/2019
Organization Name: Utah State Division of Rehabilitation - Administration
(Show others in Organization)
Address:
2540 Washington Boulevard Ste 702
Ogden, UT 84401
Phone: 801-626-3740
Toll Free Phone: 800-950-8824
Fax: 801-392-9394
Wheelchair Access: Complete
Eligibility: Utah citizens who are blind or have significant visual impairments.
Services Provided: Services for Children: Braille and Reading Instruction, Offers instruction in braille.
Preschool Programs: Maintains vision screening clinics for preschool and kindergarten children throughout the state.
In addition to providing vocational rehabilitation services, DSBVI offers a multitude of training and adjustment services.
Provider Profiles: Services also in Salt Lake, Provo, St. George
Source: Medical Home Portal
Last Updated: 6/11/2019
Address:
2460 West 26th Avenue, Suite 500-C
Denver, CO 80211
Phone: 800-342-2383
Email: ADARockyMtn@diabetes.org
Eligibility: No restrictions
Services Provided: Works to prevent and cure diabetes and improve the lives of all people affected by the disease.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
  • Health Related Advocacy Groups
  • Voluntary Health Organizations
  • Health/Disabilities Related Volunteer Opportunities
  • Court Community Service Sites
Provider Profiles:

Region includes Colorado, Montana, Utah and Wyoming.

Source: United Way 2-1-1
Last Updated: 11/10/2020
Lineagen View on Map
2677 East Parleys Way
Salt Lake City, UT 84109
Phone: 801-931-6200
Address:
2677 East Parleys Way
Salt Lake City, UT 84109
Phone: 801-931-6200
Fax: 801-931-6201
Eligibility: Individuals with autism spectrum disorder or other childhood developmental disorders. Any age.
Services Provided: Offers customized genetic testing service for individuals with autism spectrum disorder (ASD) and other disorders of childhood development plus ASD, multiple sclerosis (MS), and chronic obstructive pulmonary disease (COPD).
Provider Profiles: Lineagen, Inc. is a privately held personal genomics and biotechnology company based in Salt Lake City.
Source: Help Me Grow Utah via United Way 2-1-1
Last Updated: 1/14/2020
NAMI Utah View on Map
Address:
1600 West 2200 South, Suite 202
West Valley City, UT 84119
Phone: 801-323-9900
Toll Free Phone: 877-230-6264
Fax: 801-323-9799
Wheelchair Access: Complete
Languages Spoken: Spanish
Eligibility: Open to the public, for individuals living with mental illness
Services Provided:

Offers free support groups and education for anyone impacted by mental health conditions throughout Utah – including those with mental health conditions and their family members or loved ones. Programs offered in English and Spanish.

Services Include:

  • NAMI Basics: 6 week course for Parents of Youth and Teens with Mental Health Conditions
  • NAMI Family and Friends: free 90-minute seminar for those wanting to know how to support their loved ones
  • NAMI Family-to-Family: free 8-week course for family members, friends and significant others of adults living with mental health conditions
  • NAMI Homefront:  free 6-week course for families, caregivers and friends of military service members and veterans with mental health conditions.
  • NAMI Utah's Progression: free 8-week course for teens, ages 13-18 with any type of mental health diagnosis (anxiety, ADHD, depression)
  • Connection Support Group: free, peer-led support group for adults with mental health conditions.
  • NAMI Ending the Silence: 50- to 75-minute prevention and early intervention presentation for teens, ages 13-18, parents, and school staff.
  • Family Support Groups: free, peer-led support group for family members and loved ones of individuals with a mental health condition
Provider Profiles:

Affiliate programs located throughout the state, including Salt Lake, Utah County, Southwest, Cache Valley, Davis. See website for contact information.

Source: United Way 2-1-1
Last Updated: 9/22/2020
9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Address:
9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Email: NCIinfo@nih.gov
Wheelchair Access: Complete
Eligibility: None
Services Provided: A free public service providing the latest, most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
  • Medical Information Services
Source: Nationwide Suggest Providers Queue
Last Updated: 10/30/2020
Organization Name: Utah Department of Health
(Show others in Organization)
Address:
288 North 1460 West
Salt Lake City, UT 84114
Phone: 801-538-6096
Fax: 801-538-9913
Eligibility: Individuals living with HIV disease and family members who have no insurance, are underinsured or are not eligible for a State program, assets not over $10,000 (does not include a home or one car), low income.
Services Provided: 1. Supportive Services Program - ambulatory care, dental care, transportation services, case management, mental health services, substance abuse services, outreach services, and home health care.
2. ADAP (AIDS Drug Assistance Program) - helps eligible individuals pay for all or part of their HIV medications.
3. Health Insurance Continuation Program (COBRA) - can pay for COBRA payments for eligible individuals.
Source: Medical Home Portal
Last Updated: 11/4/2019
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Address:
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Services Provided:

Connecting Families UCD Foundation provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Connecting Families UCD Foundation hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Source: MHP-Nationwide
Last Updated: 8/19/2020
8301 Professional Place West, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700 Crisis Line: 800-332-1000
Address:
8301 Professional Place West, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Crisis Line: 800-332-1000
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Email: ContactUs@efa.org
Wheelchair Access: Full Wheelchair Access
Languages Spoken: Spanish
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided:

Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Spanish-language line: 866-748-8008

Source: Nationwide Suggest Providers Queue
Last Updated: 10/30/2020
Understood View on Map
145 Hudson Street, Suite 5B
New York, NY 10013–2150
Phone: (516) 654-7584
Address:
145 Hudson Street, Suite 5B
New York, NY 10013–2150
Phone: (516) 654-7584
Email: media@understood.org
Eligibility: Individuals with learning and thinking differences and their families
Services Provided:

Resources for individuals with thinking and learning differences, including ADHD, dyslexia, and dyscalculia. Information for parents, educators, and young adults. Also offers a workplace program for individuals in the workplace.

Offerings include articles and online resources, information about how to get assistance, and an online community.

Source: Nationwide Suggest Providers Queue
Last Updated: 6/26/2020
161 Center Street
Clearfield, UT 84015
Phone: 801-773-6781
Address:
161 Center Street
Clearfield, UT 84015
Phone: 801-773-6781
Services Provided: Provides support, training, counseling and education for parents, families, and the community involved with persons who have Down syndrome
Source: Medical Home Portal
Last Updated: 9/11/2019
310 East 4500 South, Suite 240
Murray, UT 84107
Phone: 801-281-6618
Address:
310 East 4500 South, Suite 240
Murray, UT 84107
Phone: 801-281-6618
Toll Free Phone: 877-243-8908
Fax: 801-281-6659
Email: infocenter@lls.org
Wheelchair Access: Complete
Eligibility: Patients, survivors, their families, and individuals and organizations affected by all blood cancers.
Services Provided: The mission of The Leukemia & Lymphoma Society is to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families. Services are not limited to these blood cancers and includes all known blood cancer diagnoses.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
  • Public Relations Volunteer Opportunities
Source: United Way 2-1-1
Last Updated: 11/3/2020
Address:
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Fax: 301-951-6378
Services Provided: The mission of the Cystic Fibrosis (CF) Foundation is to cure cystic fibrosis and provie all people with CF the opportunity to lead long, fulfilling lives.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.
Source: MHP-Nationwide
Last Updated: 2/7/2020