Disease/Disability Information

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

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

• Parenting Materials

Funded in part by the Maternal and Child Health Bureau.

• 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

• Disease/Disability Information
• Voluntary Health Organizations
• Non-Emergency Medical Transportation
• Health/Disabilities Related Volunteer Opportunities
• Smoking/Vaping Cessation
• Court Ordered Community Service Sites
• Health/Disability Related Support Groups

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.

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.

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.

• Therapeutic Camps
• Smoking/Vaping Cessation
• Automobile Donation Programs
• Court Ordered Community Service Sites
• Health/Disabilities Related Volunteer Opportunities
• Disease/Disability Information

• Disease/Disability Information
• Health/Disability Related Support Groups
• Voluntary Health Organizations
• Health Related Advocacy Groups
• Stroke Rehabilitation

• Health/Disabilities Related Volunteer Opportunities
• Bereavement and Grief Support Groups
• Disease/Disability Information
• Health/Disability Related Support Groups

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.

• Disease/Disability Information
• Public Relations Volunteer Opportunities
• Health/Disability Related Support Groups

Southwest Behavioral Health Center assists clients, families, and communities in preventing and recovering from severe and persistent mental illness and addiction.

• Mental Health Crisis Lines
• Suicide Prevention Hotlines
• General Assessment for Substance Use Disorders
• Psychiatric Case Management
• General Crisis Intervention Hotlines
• Mental Health Evaluation
• Comprehensive Outpatient Substance Use Disorder Treatment
• Suicide Prevention Programs
• Residential Substance Use Disorder Treatment Facilities
• General Mental Health Information/Education
• Substance Use Disorder Counseling
• General Counseling Services

Craig Roberts, LCSW
Outpatient individual mental health therapy
Outpatient family therapy
Outpatient group therapy

Issues Treated:
Fear, worry & anxiety; obsession/compulsions
Sadness, hopelessness, & depression
Rule breaking, defiance, & "acting out"
Severe mood swings & bursts of rage
Autism & related disorders
Mental health problems with co-existing chronic medical conditions attachment and relational disorders

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

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

Provides support, training, counseling and education for parents, families, and the community involved with persons who have Down syndrome

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

• Cholesterol/Triglycerides Tests
• HIV Testing
• Health/Disabilities Related Volunteer Opportunities
• Blood Pressure Screening
• Diabetes Screening
• Immigrant Benefits Assistance
• Disease/Disability Information
• Food Stamps/SNAP Applications
• Wellness Programs
• Comprehensive Immigration/Naturalization Services
• Mobile Health Care
• Community Involvement Programs

Provides families and professionals with newsletters; conference information; local event information; local services listings; links to support groups for youth, teens, siblings, grandparents and more; and links to other organizations. 

Lisa Thornton (Legal Issues - President, Utah PWSA)

• Health/Disability Related Support Groups
• Hospitals
• Medical Information Services
• Disease/Disability Information

• Nutrition Education
• Chronic Disease Self Management Programs
• Ethnic Advocacy Groups
• Language Translation
• Leadership Development
• Diabetes Management Clinics
• Language Interpretation
• Immigrant Visa Application Filing Assistance
• Diversity Awareness Training
• Health/Disability Related Support Groups
• Networking/Relationship Building Support
• Disease/Disability Information
• Citizenship Education
• Focus Group Facilitation
• Workplace Safety Education
• Certificates/Forms Assistance

• Disease/Disability Information
• Health/Disabilities Related Volunteer Opportunities
• Voluntary Health Organizations

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. 

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. 

Services Include:

• Prescription Assistance Program for Patients with Asthma 
• Utah Asthma Home Visiting Program- Salt Lake and Utah counties, TriCounty and Southeast (Medicaid only)

Nichole Shepard, MPH - Program Manager
Kellie Baxter - Health Program Specialist
Holly Uphold, PhD - Epidemiologist
Savannah Smith, MPH - Program Coordinator

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. 

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.

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

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

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).

Lineagen, Inc. is a privately held personal genomics and biotechnology company based in Salt Lake City.

• Disease/Disability Information
• Internet Information Resources
• Research Funds

• Health/Disability Related Support Groups
• Specialized Information and Referral
• Retreat Centers
• Disease/Disability Information

GiGi’s Playhouse Layton provides resources, specialized teaching, and support to individuals with Down syndrome, their families and the community. All of our programs are free to our families and are therapeutic in nature. Each of them are designed to work on specific skill development in several areas including speech and language, social development, and fine and gross motor skills.

Over 30 locations across the United States and Mexico and 200 inquiries to start new locations all over the world.

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

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

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).

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

Region includes Colorado, Montana, Utah and Wyoming.

• Voluntary Health Organizations
• Internet Information Resources
• Specialized Information and Referral
• Disease/Disability Information

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.

AKA TeleECHO

• Disease/Disability Information
• Internet Information Resources
• Specialized Information and Referral

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

• Medical Care Expense Assistance
• Specialized Information and Referral
• Disease/Disability Information

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.

Staffed by family and traditional mentors, a Diné wellness coordinator, and a legal practitioner.

• Health/Disability Related Support Groups
• Non-Emergency Medical Transportation
• Voluntary Health Organizations
• Therapeutic Camps
• Health Related Advocacy Groups
• Prescription Drugs for Specific Health Conditions
• Disease/Disability Information
• Independent Living Skills Instruction
• Health/Disabilities Related Volunteer Opportunities

Addresses the health, safety, and well-being of all infants, children, adolescents, and young adults. See also Prevention of Pediatric Overweight and Obesity at https://publications.aap.org/pediatrics/article-abstract/112/2/424/63348/Prevention-of-Pediatric-Overweight-and-Obesity?redirectedFrom=fulltext.

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.

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including 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.

Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Provides online support groups and parent community options across the country.

National

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. Provides the Drooling Impact Scale at https://www.aacpdm.org/UserFiles/file/The-Drooling-Impact-Scale.pdf.

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.

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.

Works to cure cystic fibrosis and provide all people with CF the opportunity to lead long, fulfilling lives. Conducts research on cystic fibrosis.

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.

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

Provides information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Supports research, public health education, professional health education, patient services, community services, and global organizations. National nonprofit with chapters in multiple states. 

Advocates 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.

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.

Online Resources Include:

• A variety of clinical and patient resources
• 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.

Supports people living with epilepsy, families, friends, and caregivers. Many programs, including support groups, are available through local Epilepsy Foundations, which can be located here.  

Services Include:

• Education materials about epilepsy, types of seizures, triggers, diagnosis, treatment, etc.
• National policy and legal advocacy
• Research and funding
• Public awareness
• Training programs
• 24/7 information helpline
• Kids Crew- for kids ages 14 and under
• Summer Camps

Provides training and education on hearing, hearing loss, and hearing aids.

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

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 Vaccine Finder 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 service. There is now a texting option and Hotline number in both English and Spanish for finding a vaccine. The Hotline number is in place to ensure that people who aren't online (as well as people who don't speak English or Spanish) have access to all the information they need.The CDC announced on August 3, 2021 a limited eviction moratorium, for renters living in communities experiencing substantial or high transmission of COVID-19, covering an estimated 80% of all US counties, and 90% of all renters through October 3, 2021. Find information about the CDC-Kaiser Permanente adverse childhood experiences (ACE) study at https://www.cdc.gov/violenceprevention/aces/about.html.

• Communicable Disease Control
• Vaccine Information

• Internet Information Resources
• Disease/Disability Information
• Specialized Information and Referral
• Medical Information Services

• Specialized Information and Referral
• Medical Care Expense Assistance

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.

Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. The Foundation makes continuous updates to its COVID-19 vaccine and lupus FAQ and COVID-19 and lupus FAQ pages.

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

Chapter Finder: Find support and connection in your community.

Provides 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 American Stroke Association (https://www.stroke.org/) is a division of the American Heart Association focused on stroke prevention and treatment.

Works 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

Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

• Individual Advocacy
• Information and Referral
• Equipment Distribution Program by application

Supports people with inherited blood disorders through research, education, and advocacy. Provides chapters throughout the US.

Services Include:

• Information about bleeding disorders, blood types, and blood safety
• Online and in-person educational events and workshops
• Advocacy information
• [Camp Locator] helps families find a camp for a child with a bleeding disorder, siblings, or the family.

An advocacy, education and support organization for individuals with X and Y chromosome variations and their families. This includes those with Klinefelter syndrome (47,XXY), Trisomy X (47,XXX), 47,XYY, 48,XXYY, 48,XXXY and related genetic conditions.

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.

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

• Informational Guides
• Virtual community
• Local chapters
• Fundraising and social events

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

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.

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.]

Provides online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.

Provides 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.

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.

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.

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

Information about PKU, research, advocacy, and resources.

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

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.

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.

Provides 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.

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

• Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
• Promoting awareness about OCD and related disorders to the OCD community and the general public.
• Increasing access to effective treatment through:
  • Educating mental health professionals about evidence-based treatments.
  • Providing a forum for professional collaboration and networking.
  • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

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. See the Pediatric Developmental Screening Flowchart at https://www.cdc.gov/ncbddd/autism/documents/Screening-Chart.pdf .

Involved in the research and development of evidence-based behavioral interventions and measurement tools designed to improve care for families and children with autism spectrum disorder (ASD). Also provides the RUBI Autism Network Parent Training program.

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director