Education About Disabilities/Diagnoses

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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 )

475 West 260 North
Orem, UT 84057
Phone: 801-221-9930
Service Categories:
Address:
475 West 260 North
Orem, UT 84057
Phone: 801-221-9930
Fax: 801-221-0649
Email: volunteer@kotm.org
Languages Spoken: Mandarin, Portuguese, Spanish
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.

  • Early Head Start
  • Infant and Early Childhood Mental Health
  • Family Counseling
  • Autism Therapy
  • General Counseling Services
  • Community Based Preschools
  • Disease/Disability Information
  • Early Intervention for Children With Disabilities/Delays
  • Parenting Materials
  • Child Care Volunteer Opportunities
  • Children's Out of Home Respite Care
Provider Profiles:

Buildings based in Orem and St. George.

Offers in-home services throughout the Utah and Salt Lake Valley, Price, Moab, and Cedar City.

Source: United Way 2-1-1
Last Updated: 10/12/2021
5296 Commerce Drive, Suite 302
Murray, UT 84107
Phone: 801-272-1068
Service Categories:
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:

Family Voices provides one-on-one assistance to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through a national network, provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care. COVID-19 UPDATE: Following all CDC and State guidelines.

  • Parenting Materials
Provider Profiles:

Funded in part by the Maternal and Child Health Bureau.

Source: United Way 2-1-1
Last Updated: 5/10/2021
895 North 900 East
American Fork, UT 84003
Phone: 801-763-4008
Service Categories:
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
1408 South 1100 East
Salt Lake City, UT 84105
Phone: 800-865-5004
Service Categories:
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)
Languages Spoken: Spanish, Other languages upon request
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.

COVID-19 UPDATE: Office is closed until further notice. Contact for more information. Following all CDC and State guidelines.

  • Public Awareness/Education
  • Sexually Transmitted Disease Treatment
  • AIDS/HIV Prevention Counseling
  • Health Care Referrals
  • Navigator Programs
  • Food Pantries
  • HIV Testing
  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: United Way 2-1-1
Last Updated: 5/25/2021
1355 Peachtree Street, Ste 600
Atlanta, GA 30309
Phone: 844-571-4357
Service Categories:
Address:
1355 Peachtree Street, Ste 600
Atlanta, GA 30309
Phone: 844-571-4357
Email: dmartinez@arthritis.org
Services Provided:

Offers information and tools to help people live a better life with arthritis.

COVID-19 UPDATE: All support groups and conferences are now virtual.

  • Health Care Referrals
  • Disease/Disability Information
  • Voluntary Health Organizations
  • Advocacy
  • Chronic Disease Self Management Programs
Source: United Way 2-1-1
Last Updated: 5/21/2021
375 East 100 South, Fl 1
Salt Lake City, UT 84111
Phone: 801-493-4700
Service Categories:
Address:
375 East 100 South, Fl 1
Salt Lake City, UT 84111
Phone: 801-493-4700
Toll Free Phone: 800-227-2345
Email: cidne.christensen@cancer.org
Wheelchair Access: Complete
Languages Spoken: Spanish, Must speak some English
Eligibility:

Individuals with a cancer diagnosis, their family and friends.

Services Provided:

Nationwide advocacy and information services to find a cure for, and prevent cancer. Provides information, support, and connects access to care, smoking cessation programs, and non-emergency medical transportation.

COVID-19 UPDATE: Transportation currently not being offered. Office is by appointment only. Some services are temporarily suspended or provided virtually. Contact for more information. Following all CDC and State guidelines.

  • Smoking/Vaping Cessation
  • Health/Disability Related Support Groups
  • Disease/Disability Information
  • Non-Emergency Medical Transportation
  • Court Community Service Sites
  • Health/Disabilities Related Volunteer Opportunities
  • Voluntary Health Organizations
Source: United Way 2-1-1
Last Updated: 5/24/2021
81 North Mario Capecchi Drive
Primary Children's Hospital
Salt Lake City, UT 84113
Phone: 801-213-3599
Service Categories:
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: Medical Home Portal
Last Updated: 12/8/2020
772 East 3300 South, Suite 210
Salt Lake City, UT 84106
Phone: 801-484-0325
Service Categories:
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
3920 South 1100 East Ste 240
Salt Lake City, UT 84124
Phone: 800-586-4872
Service Categories:
Address:
3920 South 1100 East Ste 240
Salt Lake City, UT 84124
Phone: 800-586-4872
Fax: 801-484-5461
Email: utinfo@lungs.org
Wheelchair Access: Not At All
Services Provided: Offers practical help to people living with asthma, emphysema, COPD and other lung diseases. 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. Related volunteer opportunities are available.COVID-19 UPDATE: Following all CDC and state guidelines.

  • Therapeutic Camps
  • Court Community Service Sites
  • Smoking/Vaping Cessation
  • Health/Disabilities Related Volunteer Opportunities
  • Automobile Donation Programs
  • Disease/Disability Information
Source: United Way 2-1-1
Last Updated: 5/18/2021
85 North Medical Drive
Craig H. Neilsen Rehabilitation Hospital
Salt Lake City, UT 84158
Phone: 801-709-1420
Service Categories:
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
250 North 1950 West Ste B
Salt Lake City, UT 84116
Phone: 801-323-4343
Service Categories:
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
59 South 1100 East
Salt Lake City, UT 84106
Phone: 801-236-2294
Service Categories:
Address:
59 South 1100 East
Salt Lake City, UT 84106
Phone: 801-236-2294
Fax: 385-235-6763
Email: helpdesk@survivorwellness.org
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: Emotional and spiritual support, mind and body wellness, and social and community leadership. More than 30 programs available 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.

  • Bereavement Support Groups
  • Disease/Disability Information
  • Health/Disability Related Support Groups
  • Health/Disabilities Related Volunteer Opportunities
Source: United Way 2-1-1
Last Updated: 12/1/2020
288 North 1460 West
Salt Lake City, UT 84114
Phone: 801-538-6096
Service Categories:
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
729 Arapeen Drive, U of U Imaging and Neurosciences Ctr
Salt Lake City, UT 84108
Phone: 877-740-4372
Service Categories:
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
310 East 4500 South, Suite 240
Murray, UT 84107
Phone: 801-281-6618
Service Categories:
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
Languages Spoken: Interpreters available
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.

COVID-19 UPDATE: All office are closed. Support groups and conferences are virtual. Donations must be mailed to the regional processing center or the local address.

  • Disease/Disability Information
  • Public Relations Volunteer Opportunities
  • Health/Disability Related Support Groups
Source: United Way 2-1-1
Last Updated: 7/8/2021
2540 Washington Boulevard Ste 702
Ogden, UT 84401
Phone: 801-626-3740
Service Categories:
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
1424 East Foremaster Drive, Suite 120
St. George, UT 84790
Phone: 435-251-2888
Service Categories:
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
652 South Medical Center Drive
St. George, UT 84790
Phone: 435-251-1000
Service Categories:
Organization Name: Intermountain Healthcare
(Show others in Organization)
Address:
652 South Medical Center Drive
St. George, UT 84790
Phone: 435-251-1000
Fax: 435-251-2255
Services Provided:

Facility offers rehabilitation services, sports medicine and Acceleration sports training programs, outpatient surgeries, the Neurosciences Institute, and much more.

Provider Profiles:

Spirometry testing ages 5 and older 435 251-1650, asthma education 435 251-1653

Source: Medical Home Portal
Last Updated: 6/22/2021
161 Center Street
Clearfield, UT 84015
Phone: 801-773-6781
Service Categories:
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
2240 Adams Avenue
Ogden, UT 84401
Phone: 801-393-5355
Service Categories:
Address:
2240 Adams Avenue
Ogden, UT 84401
Phone: 801-393-5355
Fax: 801-394-4609
Wheelchair Access: Complete
Eligibility:

Open to all ages and cultural backgrounds.  Private, non-profit community healthcare center accepting patients with and without private health insurance, Medicaid, Medicare, CHIP (Children's Health Insurance Program), and PCN (Primary Care Network).

Services Provided:

Provides medical, dental, behavioral health, and pharmaceutical services. Affordable, needs-based healthcare to underserved residents in Northern Utah.

Other Services Include:

  • Translation and coordinated-care services
  • Assistance navigating healthcare programs/services or other financial assistance programs
  • Prenatal care and delivery
  • Well Child Visits
  • Women's Health
  • Geriatrics
  • Treatment for acute and chronic illnesses
  • Infectious Disease Management
Source: Medical Home Portal
Last Updated: 6/24/2021
780 Guardsman Way
c/o The Carmen B. Pingree Center
Salt Lake City, UT 84108
Service Categories:
Address:
780 Guardsman Way
c/o The Carmen B. Pingree Center
Salt Lake City, UT 84108
Email: autismcouncilofutah@gmail.com
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.

COVID-19 Update: Website remains available 24/7, with updates on virtual opportunities, and a list of pandemic related resources are available for those who have or are affected by autism.

  • Disease/Disability Information
  • Health Related Advocacy Groups
  • Specialized Information and Referral
Source: United Way 2-1-1
Last Updated: 5/26/2021
1750 West Research Way (2770 South) Ste 102
West Valley City, UT 84119
Phone: 801-487-4143
Service Categories:
Address:
1750 West Research Way (2770 South) Ste 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
Languages Spoken: Spanish, French, American Sign Language
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 Latino communities become healthy, self-reliant, and participatory members of society.

COVID-19 UPDATE: No walk-ins at this time. Please call for information and appointment.

  • Diabetes Screening
  • Cholesterol/Triglycerides Tests
  • HIV Testing
  • Disease/Disability Information
  • Health/Disabilities Related Volunteer Opportunities
  • Comprehensive Immigration/Naturalization Services
  • Mobile Health Care
  • Wellness Programs
  • Immigrant Benefits Assistance
  • Food Stamps/SNAP Applications
  • Community Involvement Programs
  • Blood Pressure Screening
Source: United Way 2-1-1
Last Updated: 5/24/2021
1950 Circle of Hope Drive (100 South)
Salt Lake City, UT 84112
Phone: 801-587-7000
Service Categories:
Address:
1950 Circle of Hope Drive (100 South)
Salt Lake City, UT 84112
Phone: 801-587-7000
Toll Free Phone: 800-824-2073
Fax: 801-587-9235
Email: patient.education@hci.utah.edu
Languages Spoken: Spanish
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: 5/19/2021
5280 South Commerce Drive Ste E-140
Salt Lake City, UT 84107
Phone: 801-265-1111
Service Categories:
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
Languages Spoken: Spanish
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 through health and social programs.

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.

COVID-19 UPDATE: Following all CDC and State guidelines. Many in-person activities and meetings are only being held via Zoom and WhatsApp.

  • Nutrition Education
  • Chronic Disease Self Management Programs
  • Diabetes Management Clinics
  • Ethnic Advocacy Groups
  • Language Translation
  • Language Interpretation
  • Leadership Development
  • Disease/Disability Information
  • Focus Group Facilitation
  • Immigrant Visa Application Filing Assistance
  • Citizenship Education
  • Workplace Safety Education
  • Cultural Awareness/Competencies Training
  • Health/Disability Related Support Groups
  • Networking/Relationship Building Support
Source: United Way 2-1-1
Last Updated: 5/27/2021
455 East 500 South Ste 308
Salt Lake City, UT 84111
Phone: 801-532-2335
Service Categories:
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.

COVID-19 UPDATE: Following all CDC and State guidelines.

  • Disease/Disability Information
  • Health/Disabilities Related Volunteer Opportunities
  • Voluntary Health Organizations
Source: United Way 2-1-1
Last Updated: 5/18/2021
90 East 200 North
Logan, UT 84321
Phone: 435-787-4165
Service Categories:
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
PO Box 2265
St. George, UT 84771
Phone: 541-331-6979
Service Categories:
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: Medical Home Portal
Last Updated: 12/8/2020
Salt Lake City, UT
Service Categories:
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
1121 East 3900 South Ste C230
Salt Lake City, UT 84106
Phone: 801-262-9494
Service Categories:
Address:
1121 East 3900 South Ste C230
Salt Lake City, UT 84106
Phone: 801-262-9494
Fax: 801-269-0304
Email: info@utahcancer.com
Languages Spoken: Spanish
Eligibility:

Cancer patients

Services Provided: Provides information, education, advocacy and 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: 5/20/2021
Lineagen View on Map
2677 East Parleys Way
Salt Lake City, UT 84109
Phone: 801-931-6200
Service Categories:
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
132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 800-533-2873
Service Categories:
Address:
132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 800-533-2873
Fax: 801-530-0670
Email: info@jdrf.org
Services Provided:

The leading global organization focused on Type 1 Diabetes (T1D) research. Driven by grassroots volunteers connected to children, adolescents, and adults with this condition. JDRF is the largest charitable supporter of T1D research.

  • Disease/Disability Information
  • Research Funds
  • Internet Information Resources
Source: United Way 2-1-1
Last Updated: 5/24/2021
Salt Lake City, UT
Phone: 801-360-4666
Service Categories:
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.

COVID-19 UPDATE: All in-person support meetings and retreats have been suspended, but weekly Zoom meetings are now available. Check the calendar on the website for a link to the Zoom meetings.

  • Health/Disability Related Support Groups
  • Specialized Information and Referral
  • Retreat Centers
  • Disease/Disability Information
Source: United Way 2-1-1
Last Updated: 5/26/2021
1380 East Medical Center Drive
St. George, UT 84790
Phone: 435-251-1000
Service Categories:
Organization Name: Intermountain Healthcare
(Show others in Organization)
Address:
1380 East Medical Center Drive
St. George, UT 84790
Phone: 435-251-1000
Languages Spoken: Spanish
Services Provided:

Provides inpatient, outpatient, and emergency medical care.

  • Chronic Disease Self Management Programs
  • Emergency Room Care
  • Pregnancy/Childbirth Support Groups
  • Bereavement Support Groups
  • Hospitals
  • Disease/Disability Information
  • Safe Havens for Abandoned Newborns
  • Psychiatric Inpatient Units
  • Health/Disability Related Support Groups
Provider Profiles:

Bryce L. Ferguson, MD (Pulmonary Clinic, Meds/Peds)

Source: United Way 2-1-1
Last Updated: 9/15/2021
Salt Lake City, UT
Service Categories:
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
2460 West 26th Avenue, Suite 500-C
Denver, CO 80211
Phone: 720-855-1102
Service Categories:
Address:
2460 West 26th Avenue, Suite 500-C
Denver, CO 80211
Phone: 720-855-1102
Email: ADARockyMtn@diabetes.org
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: 5/20/2021
4516 South 700 East Ste 160
Murray, UT 84107
Phone: 801-883-9669
Service Categories:
Address:
4516 South 700 East Ste 160
Murray, UT 84107
Phone: 801-883-9669
Toll Free Phone: 800-332-1000
Fax: 301-459-1569
Email: utah@efa.org
Languages Spoken: Spanish
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: 5/26/2021
250 East 200 South Suite 1425
Salt Lake City, UT 84111
Phone: 801-585-2252
Service Categories:
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
295 Chipeta Way 2S1010
Division of General Pediatrics, Department of Pediatrics
Salt Lake City, UT 84108
Service Categories:
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.

COVID-19 UPDATE: Everyone entering the physical location must wear a face covering (mask) including patients, visitors, staff, and students. Access to information on the website remains available 24/7.

  • Disease/Disability Information
  • Internet Information Resources
  • Specialized Information and Referral
Source: United Way 2-1-1
Last Updated: 5/24/2021
352 South Denver Street Ste 101
Salt Lake City, UT 84111
Phone: 801-364-0366
Service Categories:
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
729 South Arapeen Drive
Salt Lake City, UT 84108
Phone: 801-585-2354
Service Categories:
Address:
729 South Arapeen Drive
Salt Lake City, UT 84108
Phone: 801-585-2354
Email: rebecca.starks@hsc.utah.edu
Eligibility:

People with Parkinson's disease, family, and caregivers.

Services Provided:

Initiative by the University of Utah to help people impacted by Parkinson's disease through wellness, education, outreach, and community impact.

COVID-19 UPDATE: Following all CDC and state guidelines.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: United Way 2-1-1
Last Updated: 5/18/2021
6337 South Highland Drive Ste 336
Mountain America Credit Union Bldg
Holladay, UT 84121
Phone: 801-254-5524
Service Categories:
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
P.O. Box 744
Farmington, NM 87499
Phone: 505-226-3073
Service Categories:
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
PO Box 199
Lehi, UT 84043
Phone: 801-341-8024
Service Categories:
Address:
PO Box 199
Lehi, UT 84043
Phone: 801-341-8024
Email: info@epilepsyut.org
Languages Spoken: Translators available with prior notice.
Services Provided:

Provides awareness, education, support groups, 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
  • Prescription Drugs for Specific Health Conditions
  • Disease/Disability Information
  • Independent Living Skills Instruction
  • Health/Disabilities Related Volunteer Opportunities
Source: United Way 2-1-1
Last Updated: 5/21/2021
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Service Categories:
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
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
Service Categories:
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
42-40 Bell Boulevard, Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Service Categories:
Address:
42-40 Bell Boulevard, 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: 1/4/2021
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Service Categories:
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
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Service Categories:
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
1963 McCraren Rd.
Highland Park, IL 60035
Service Categories:
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
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Service Categories:
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
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Service Categories:
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
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Service Categories:
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
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Service Categories:
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
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Service Categories:
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
Campus Box 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Service Categories:
Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)
Address:
Campus Box 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Services Provided:

Offers support to 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.

Source: MHP-Nationwide
Last Updated: 9/1/2021
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-556-9222
Service Categories:
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
8301 Professional Place West, Ste 230
Hyattsville, MD 20785
Phone: 301-459-3700
Service Categories:
Address:
8301 Professional Place West, Ste 230
Hyattsville, MD 20785
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Email: ContactUs@efa.org
Wheelchair Access: Full Wheelchair Access
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.  Offers support groups for people with epilepsy.

Spanish-language line: 866-748-8008

Source: Nationwide Suggest Providers Queue
Last Updated: 6/17/2021
6700 Washington Avenue South
Eden Prairie, MN 55344
Phone: 800-328-8602
Service Categories:
Address:
6700 Washington Avenue South
Eden Prairie, MN 55344
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.

COVID-19 UPDATE: Following all CDC and State guidelines.

  • Hearing Aids
Source: Nationwide Suggest Providers Queue
Last Updated: 6/3/2021
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Service Categories:
Address:
110 West Road Ste 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.

COVID-19 HOURS: Following all CDC and State guidelines.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 6/3/2021
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Service Categories:
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
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
Service Categories:
Address:
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
TDD: 888-232-6348
Eligibility:

No restrictions

Services Provided:

Protects America from health, safety, and security threats, both foreign and within the U.S. Conducts critical science and provides vital information that protects the nation against dangerous health threats, and responds to emergencies when they arise. Visit website for the most up to the minute information on COVID-19.

COVID-19 Update: The VaccineFinder website is a free, online service where users can search for locations that offer vaccinations. The Website was developed by CDC and partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination services.

  • Communicable Disease Control
  • Vaccine Information
Source: MHP-Nationwide
Last Updated: 8/18/2021
9609 Medical Center Drive
Rockville, MD 20850
Phone: 800-422-6237
Service Categories:
Address:
9609 Medical Center Drive
Rockville, MD 20850
Phone: 800-422-6237
Email: nciinfo@nuh.gov
Wheelchair Access: Complete
Languages Spoken: Spanish
Eligibility:

None

Services Provided:

A free public service providing easy to understand, accurate, up-to-date, and reliable information services to answer cancer-related questions to patients, their friends and family, healthcare providers, or researchers. Includes answers to clinical trial questions, how to find treatment, risk factors, symptoms, diagnostics, and treatment, etc. Leads, conducts, and supports cancer research across the nation to help all people live longer, healthier lives.

COVID-19 UPDATE: Following all CDC and State guidelines.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
  • Medical Information Services
Source: Nationwide Suggest Providers Queue
Last Updated: 6/3/2021
3104 E Boundary Ct
Midlothian, VA 23112
Phone: 800-366-7741
Service Categories:
Address:
3104 E Boundary Ct
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Fax: 804-744-9388
Email: psiops@uneedpsi.org
Languages Spoken: Spanish, other language interpreters available
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.

COVID-19 UPDATE: Following all CDC and State guidelines.

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

Online resources

Source: MHP-Nationwide
Last Updated: 6/3/2021
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Service Categories:
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
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
Service Categories:
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
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Service Categories:
Address:
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-657-6398
Fax: 202-349-1156
Email: info@lupus.org
Languages Spoken: Spanish
Services Provided:

Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.

  • Health/Disability Related Support Groups
  • Disease/Disability Information
  • Voluntary Health Organizations

Chapter Finder: Find support and connection in your community.

Source: MHP-Nationwide
Last Updated: 6/3/2021
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Service Categories:
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
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Service Categories:
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
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Service Categories:
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
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Service Categories:
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
375 Kings Highway North
Cherry Hill, NJ 08034
Service Categories:
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
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Service Categories:
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
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Service Categories:
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
JDRF View on Map
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Service Categories:
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
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Service Categories:
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
Delaware, OH 43065
Phone: 740-972-5619
Service Categories:
Address:
Delaware, 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.

Services Include:

  • 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: 9/1/2021
PO Box 7762
Wilmington, DE 19803
Service Categories:
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
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830
Service Categories:
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
Understood View on Map
145 Hudson Street, Suite 5B
New York, NY 10013–2150
Phone: (516) 654-7584
Service Categories:
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
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Service Categories:
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
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Service Categories:
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
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Service Categories:
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
Service Categories:
Address:
Services Provided:

Information about PKU, research, advocacy, and resources.

Find a Clinic by state, zip code, or map.

Source: MHP-Nationwide
Last Updated: 8/19/2020
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Service Categories:
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
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
Service Categories:
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
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Service Categories:
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
Organization Name: Center for Disease Control and Prevention
(Show others in Organization)
Address:
1600 Clifton Road
Atlanta, GA 30329
Toll Free Phone: 800-232-4636
Services Provided:

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/18/2021