Specialized Information Resources

Provides information for people with disabilities who are SSI or SSDI recipients and want to work.

(SSI)

Govbenefits.com is a free confidential prescreening tool for state and federal government programs. Search for benefits you may be able to receive.

Internet resource, State and Federal resources
Partners with USA.gov

The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease.

Services Include:

• Information and resources about kidney disease
• Patient Information Help Line
• Peer mentor support program
• Self management app for food choices

Safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work includes accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. Website features advocacy information and resources.

NAD Youth Leadership Camp (YLC) is a four-week intensive educational program for high school students. Camp Taloali, Stayton, Oregon.

Responds to inquiries about a diverse range of topics related to deaf and hard-of-hearing children from infancy to age 21.

Provides mental health information on the following topics: getting help, statistics, clinical trials, outreach, research, opportunities for funding, and labs at NIMH.

A national organization of and for people with developmental disabilities and their families. Website provides information about public policy; insurance products information; publications; discussion groups; employment registry; and links to local chapters and related organizations.

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.

IMPACT provides a variety of educational resources and tools for understanding aspects of raising a health family.

IMPACT stands for Improving Maternal Child Health Programs and Policies so All Children Thrive. IMPACT is a project of national Family Voices.

IMPACT promotes a holistic approach to health and wellness for all families and children including those with special healthcare needs and disabilities.

IMPACT elevates and expands the capacity of family organizations – those that serve all children as well as those that serve children with special needs and disabilities  –  to educate and inform families about lifestyle strategies and choices that positively impact the long-term good health of children. 

IMPACT promotes health and wellness by developing materials and tools and sharing other resources that help families learn skills to build healthy relationships, healthy families, and healthy communities.

A voluntary health agency that works to combat muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related muscle-debilitating diseases. The organization is committed to finding treatments and cures while providing a comprehensive program to empower families with support to help them thrive and stay independent including summer camps for kids, peer support, equipment resources and more. Related volunteer opportunities available.COVID-19 Update: following all CDC and state guidelines.

• Voluntary Health Organizations
• Assistive Technology Expense Assistance
• Health/Disabilities Related Volunteer Opportunities
• Therapeutic Camps
• Health/Disability Related Support Groups

National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.

Psychology Today's Therapy Directory is run here Sussex Directories.

Committed to full participation of persons with disabilities in post-secondary education. Website resources include civil rights, legal resources, DSS professionals.

Affiliate programs Utah AHEAD, New Mexico AHEAD

Provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals, and educational professionals. Available for free, as a monthly email. 

The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels, and the Lifespan Respite Technical Assistance Center.

The ARCH National Respite Network includes summer camps for both children and adults with special needs.

A cooperative agreement with the US Administration for Community Living/ Administration on Aging

SMA, part of the Childhood Anxiety Network, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child with the anxiety disorder known as Selective Mutism (SM).

SMA is the nation’s premier resource for information on SM. Provides a network of professionals, families and affected individuals across the world who understand the struggle of living in silence.

SMA Support Groups by State: list of SMA support groups.

Find a Treating Professional: Directory of professionals that have joined the SMA community.

Provides information on caregiver services, policy and research. Search for state-based resources using the Services by State tool.

Provides essential information on costs for thousands of procedures and learn insurance basics. A national independent, nonprofit corporation whose mission is to bring transparency to healthcare costs and health insurance information through comprehensive data products and consumer resources. Search for medical and dental costs.

Internet-based service

Resources for individuals with disabilities: Topical List, Printable Resources, Web Resources, Tip Sheets, Video Resources and Toolkit for IDD at Tip Sheets and Resources with Health Watch Tables.

For recent applications for Social Security disability benefits or Supplemental Security Income (SSI) that were denied for medical reasons,
request an appeal online and provide documents to support appeal electronically. Individuals may also continue an appeal already started.

Internet resource
TDD Phone for Salt Lake City area 800 325 0778

Provides objective and credible information, advocacy and research for diabetes. Website offers education, legal rights, health insurance, tips for caregivers, etc. Provides camps for children with Type I diabetes and with or at risk of developing Type II diabetes.

Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.

AKA Myotonic Dystrophy Foundation

The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community, and committed to the prevention of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development, and to supporting individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/ developmental disabilities.

Provides support to people with learning disabilities, their parents, teachers and other professionals with cutting edge information on learning disabilities, practical solutions, and a comprehensive network of resources.

A locator tool allows cancer patients and oncology professionals to search for fertility preservation services in their area, and to submit referrals or request appointments through a secure online system.

A website that provides resources to parents from the American Academy of Pediatrics. Includes tools to locate pediatricians and pediatric specialists throughout the US.

Connects individuals and families affected by cleft lip/palate and other craniofacial to team care, providing education, and offerings personal support. Awards College scholarships, research grants, and silent auction. Provides patient/family Connections Conferences and 24 hour Cleftline.

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

Provides health information, education, financial assistance, advocacy, and resources for kidney patients and health care professionals in English and Spanish. Services include disease/disability information, medical care expense assistance, and internet information. Programs for children include the Summer Enrichment Program and the annual Calendar Kids Art Contest.COVID-19 UPDATE: Following all CDC and state guidelines.

• Medical Care Expense Assistance
• Internet Information Resources
• Disease/Disability Information

• Credit Reporting Agencies

• Specialized Information and Referral
• Health/Disability Related Support Groups

Provides the latest autism science and information, funding research into the causes, prevention, treatments and cures for autism, awareness of autism spectrum disorders, advocacy for the needs of individuals with autism and their families and an online store. COVID-19 UPDATE: Offering 30+ hours of free online video learning resources; visit website for programming.

• Specialized Information and Referral
• Disease/Disability Information

An online resource of six national non-profit autism organizations whose mission is to reduce autism-related wandering incidents and deaths. Provides an online Family Wandering Emergency Plan, Big Red Safety Box program, and Toolkits for caregivers, first-responders and teachers.

• Specialized Information and Referral

The Crohn's & Colitis Foundation is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's Disease and ulcerative colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.

COVID-19 UPDATE: Following all CDC and State guidelines. Please contact to verify if support group is meeting online or in person.

• Specialized Information and Referral
• Disease/Disability Information
• Research Funds
• Internet Information Resources
• Health/Disability Related Support Groups

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

• General Health Insurance Information/Counseling

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

• Patient/Family Housing
• Specialized Information and Referral

• Specialized Information and Referral
• Prescription Drug Discount Cards

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

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

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

• Health/Disability Related Support Groups
• Specialized Information and Referral

Internet based resource

• Clinical Trials
• Disease/Disability Information
• Specialized Information and Referral

• Specialized Information and Referral
• Medical Care Expense Assistance

• Drug Use Disorder Support Groups
• Alcohol Use Disorder Support Groups
• Families/Friends of Individuals With a Drug Use Disorder Support Groups
• Families/Friends of Individuals With an Alcohol Use Disorder Support Groups

Non-profit foundation which promotes the health and well-being of people living with a spinal cord injury, mobility impairment, and paralysis. The Paralysis Resource Center (PRC) is staffed with information specialists who can provide individualized support via phone/email on any topic related to paralysis, such as what to expect in rehab, the best equipment exchange programs, peer mentoring, educational materials, etc.

• Specialized Information and Referral

Non-medical information on blindness, and referrals to various sources of help, state services for the blind, and state libraries for the blind.

Resources: Offers a variety of resources, including Job Connection, Blind/Low Vision resources, peer support, and more

Scholarships: Scholarships for freshman, undergraduate, and graduate students. To be eligible for a scholarship, applicants need to be legally blind, maintain a 3.0 GPA to be eligible for most scholarships, be a full-time student (as well as students who work 32 or more hours per week and attend college part time), and be involved in their school/local community.

Programs and Services: Audio Description Project, Advocacy and Governmental Affairs, Radio, and more.

Provides support to families of children with mucopolysaccharidoses (MPS) and mucolipidosis (ML) diseases through education, fundraising assistance for medical expense assistance, resource guides, and advocacy.

Engages, educates, and empowers young people to prevent and end abusive relationships by offering support through 24/7 hotlines and specialized information/ referral. COVID-19 UPDATE: Following all CDC and State guidelines.

• Dating Abuse Hotlines
• Specialized Information and Referral

Online medical information resource directs to information to help answer health questions. Information on drugs displays an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.

Provides information and treatment options for eating disorders.

Confidential Helpline Monday-Thursday (800-931-2237) from 9am to 9pm ET and Friday from 9am to 5pm ET.

24/7 crisis support: text 'NEDA' to 741741

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.

Information on HIV/AIDS conferences, news and events, public policy, resources, technical assistance, treatment information and hotlines.

AKA National Minority AIDS Council

NCHPAD is the premier resource for information on physical activity, health promotion, and disability, serving persons with physical, sensory and cognitive disability across the lifespan. website features a variety of resources and services which can benefit all ages and populations.

Provides advocacy, education, support and research for the prevention, treatment and cure of liver disease. The Desert Southwest Division serves Arizona, New Mexico, Texas and Utah.

Provides awareness, education, and research to support families living with Fragile X. 

A national web-based clearinghouse on post-secondary education for individuals with disabilities. Provides national conferences, training sessions, and workshops, develops training modules, publishes resource papers, fact sheets, directories, and website information, and fosters a network of professionals.

Advocates for the rights of adults and children who have mental disabilities. The Bazelon Center envisions an America where people who have mental illnesses or developmental disabilities exercise their own life choices and have access to the resources that enable them to participate fully in their communities.

Aims to ensure success for all individuals with learning disabilities in school, at work and in life.

Services Include:

• Information and Referral Resources
• Library Services
• Special Education Assessment
• Speech and Language Evaluations
• System Advocacy
• Scholarships for two graduating high school seniors with documented learning disabilities and/or ADHD who are pursuing post-secondary education.

Provides general information on child safety and injury prevention. Education materials are available on such topics as car seats inspections, seat belt safety and helmet safety for bicyclists.

Provides critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

Provides parents and expectant parents with information about birth defects and support services for their children; a parent-matching program that links families who have children with similar birth defects; sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

Promotes the interests of people with Down syndrome and their families through advocacy, public awareness, and information.

Services Include:

• programs and resources
• an adult sibling toolkit
• a family care toolkit
• an Ages & Stages development resource library
• healthcare and medical resources
• outreach and education including the Down Syndrome Summit and Parent Webinars
• policy and advocacy including the National Down Syndrome Advocacy Coalition and a tool kit for self-advocates
• an annual convention that includes a Kids' Camp

Provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

Information and Referral
Library Services

Support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases

Information and Referral

Conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. Collects and disseminates research information related to neurological disorders.

Information and Referral
Library Services

Facilitates support groups for those with hereditary and sporadic ataxia. The Foundation also provides information about ataxia, current research activities and
a listing of neurologists in the United States who see patients with ataxia.

Family Support Centers/Outreach
Information and Referral
Support Groups

The primary professional organization in this specialized area, encouraging equipment development to maximize the transportation options for persons with disabilities. To find a driver rehabilitation specialist in or near your area, please visit our website.

Driving Safety Education

Seeks to improve the health of babies by preventing birth defects and reducing infant mortality. Campaigns for Healthier Babies, which includes programs of research, community service, education and advocacy.

Information and Referral
Library Services

Dedicated to improving the lives of everyone affected by Huntington's disease. From community services and education to advocacy and research.

Services Include:

• Information and Referral
• Library Services
• Peer Counseling

Supporting treatment and research for familial dysautonomia. FD is a hereditary disease of the sensory and autonomic nervous systems.

Information and Referral
Library Services

MaleSurvivor fosters a healing community where tens of thousands of men from more than 200 countries come together to find support, information and — most importantly — hope. Services include online forum, support groups, find a therapist, and resources for family members and loved ones of victims.

Support Groups: Find support groups, events, and reading recommendations.

Find a Therapist: Search clinics and clinicians by name or location.

For parents: Resources for parents of sexual abuse survivors.

Provides ongoing peer-to-peer support, education, and advocacy to heart patients and their families. Local chapter locator available on website.

Services Include:

• peer support and education
• education resources
• hospital outreach
• CHD awareness
• community health education
• online community
• advocacy

Provides information, advocacy, research, and referrals for individuals with multiple sclerosis and their families. Website includes a locator for local chapters, doctors, resources, and events.

GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic disease. In addition to website-based information you may contact a GARD Information Specialist. Also, GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often ask us.

GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).

An exhaustive library of informational materials on worldwide developments in spondylitis,
A state by state locator to search for a rheumatologist.
Accessibility Information
Specialized Information and Referral
Support Groups

Provides current information about thyroid cancer and support services available to people at any stage of testing, treatment, or lifelong monitoring for thyroid cancer, as well as their caregivers. Receives ongoing input and review from numerous thyroid cancer specialists.

COVID-19 UPDATE: Some groups are being held virtually; please call or visit website to verify.

• Internet Information Resources
• Specialized Information and Referral
• Health/Disability Related Support Groups

Provides awareness for support, education and research.
Provides educational and emotional support, stimulates and support research designed to identify the cause and cure for scleroderma, and improve methods of treatment; and enhances the public's awareness of this disease.
Chapters and Support Groups may be located in Resources.

• Infertility Support Groups
• Specialized Information and Referral

General vaccine information and finder.

FAQs about vaccines, including general vaccine safety, and specific vaccines.

Find Vaccine: Locate vaccines by type and location. Call first to schedule an appointment and verify vaccine supplies.

Project of:

• Boston Children's Hospital
• Centers for Disease Control and Prevention (CDC)
• Harvard Medical School
• HealthMap

Provides and online resources for coping with body-focused repetitive behaviors (like hair pulling and skin picking). Website is designed for those with these behaviors, family members, medical and mental health professionals, and others interested in learning about this often-misunderstood disorder.

Services Include:

• Specialized Information and Referral
• Therapist Directory
• Support Group

The National Caregivers Library contains online information and resources to assist caregivers and seniors with useful forms, checklists, and topic-specific external resources. The resources are made available at no cost through alliances with professionals, businesses, and other agencies serving seniors and their caregivers with a variety of services.

• Specialized Information and Referral

Internet resource

Improves the health and well-being of vulnerable populations in partnership with the medical community through the work of volunteer attorneys.

Local programs can be identified using Directory of Programs.

• Veteran Benefits Assistance
• Specialized Information and Referral
• Veteran Reintegration Counseling