Education About Disabilities/Diagnoses

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

Buildings based in Orem and St. George.

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

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

Funded in part by the Maternal and Child Health Bureau.

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

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

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

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

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

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

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

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 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

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

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

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

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

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

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. 

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

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

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

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

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

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

Region includes Colorado, Montana, Utah and Wyoming.

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

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

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

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

• Disease/Disability Information
• Specialized Information and Referral

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

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.

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 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.

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

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.

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.

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

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

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

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

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

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

Online resources

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.

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

Chapter Finder: Find support and connection in your community.

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.

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.]

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.

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.

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.