Education About Disabilities/Diagnoses

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.

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

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.

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

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

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

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

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

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

Parent-led non-profit organization that responds to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.

• Assistive Technology Expense Assistance
• Disease/Disability Information

Latino Behavioral Health Services is a peer-run nonprofit organization that provides prevention and recovery support through education, empowerment, facilitation of resources and services, with responsiveness to cultural, socioeconomic and linguistics characteristics. LBHS programs enhance the awareness and well-being of people with serious emotional disturbances, mental health conditions, substance use disorders, suicide-attempt survivors, and their caregivers and loved ones. LBHS programs are offered at low or no cost.

COVID-19 UPDATE: All services are available via phone. Some classes have been discontinued, while some remain in smaller groups. Offices are closed to walk-in traffic.

• Advocacy
• Mental Health Related Support Groups
• Teaching/Instruction Volunteer Opportunities
• Court Community Service Sites
• Volunteer Mobilization Events
• Mental Health Information/Education
• Specialized Information and Referral

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

Chapter Finder: Find support and connection in your community.

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

• Disease/Disability Information
• Incidental Medical Expense Assistance

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

Live Well Breathe Well online education for adults with asthma

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

Spanish-language line: 866-748-8008

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.]

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

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

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

Internet resources, use search to find local resources.

Supporting International Meeting for Autism Research (IMFAR)

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

Region includes Colorado, Montana, Utah and Wyoming.

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

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

Information about PKU, research, advocacy, and resources.

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

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.

• Public Awareness/Education
• Sexually Transmitted Disease Treatment
• AIDS/HIV Prevention Counseling
• Health/Disability Related Support Groups
• HIV Testing
• Disease/Disability Information
• Health Care Referrals
• Navigator Programs
• Food Pantries

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

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

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.

• Hearing Aids

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.

• Disease/Disability Information
• Specialized Information and Referral

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.

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.

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

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

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

• Parenting Materials

Funded in part by the Maternal and Child Health Bureau.

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

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.

• 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. Programs offered in English and Spanish.

Services Include:

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

COVID-19 UPDATE: Through MAY 1, 2020, phone support will continue. Please call the Main or toll-free line to speak with a NAMI mentor. If the Mentors are busy, please leave a message and NAMI will call back as soon as possible. NAMI Utah is Utah's voice on mental illness. The National Alliance on Mental Illness (NAMI) Utah's mission is to ensure the dignity and improve the lives of those who live with mental illness and their families through support, education, and advocacy.

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

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. 

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

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

Mary Burris, M.D., Medical Director

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

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

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.

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

Internet Resources

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.

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.

• Medical Care Expense Assistance
• Specialized Information and Referral

Online resources

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

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.

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

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.

• Disease/Disability Information
• Prescription Expense Assistance
• Health/Disability Related Support Groups
• Voluntary Health Organizations

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.

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

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

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.

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

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

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

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

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

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

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, 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

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

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

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