Specialized Information Resources

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

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.

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.

Since 1950, we've spearheaded efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases. We fund groundbreaking research for promising treatments and provide families with the highest quality care from the best doctors in the country.

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. 

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.

Operates a toll-free referral line and national website where parents and child care providers can receive information about finding, choosing, and paying for child care, and referrals to local child care resource and referral agencies to receive individualized assistance.

Get 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.

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.

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.

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.

Provides research, educational forums, publications, subject matter experts, and current information on treatment and prevention of eating disorders.

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

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

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

Federal law requires each of the three nationwide consumer credit reporting companies, Equifax, Experian, and TransUnion, provide consumers a free credit report every 12 months if interested. This website allows users to request a credit report from any or all of the companies annually.

COVID-19 UPDATE: Offering free online reports through April 2021

• 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.

• 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

The Marketplace is a new way to find health coverage that fits the individual's budget and needs. With one application, the individual can see all options and enroll. Open enrollment runs from November to December; please see the website for specific dates.

COVID-19 UPDATE: check with health insurance company for specific benefits and coverage for COVID-19. Login to update your marketplace application if COVID-19 impacts your income or household. May be able to change your plan if certain situations apply.

• General Health Insurance Information/Counseling

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

Not an actual house, but a website that lists thousands of places to stay across the country near hospitals and treatment centers that offer a discount for traveling cancer patients and their loved ones. Although Joe's House caters to cancer patients, any patient, regardless of diagnosis, may use the lodging facilities listed.

COVID-19 UPDATE: Many lodging facilities are closed or have limited services. Please call for the most up to date status.

• Patient/Family Housing
• Specialized Information and Referral

Empowers the cancer community to address the unmet needs of cancer survivors. To do so, collaboration, knowledge-sharing, and partnership are encouraged. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.

• Specialized Information and Referral

The National Association of Anorexia Nervosa and Associated Disorders, Inc. (ANAD) is a non-profit organization working in the areas of support, awareness, advocacy, referral, education, and prevention. ANAD assists people struggling with eating disorders and also provides resources for families, schools and the eating disorder community. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.

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

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

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 an online clearinghouse for the latest evidence-based information and resources on ADHD. The National Resource Center on ADHD is a program of CHADD.

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

Internet based resource

Provides research, patient support, community outreach, and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. The programs aims to create a sense of hope and community so no one has to face pancreatic cancer alone.

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

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

Self-Management and Recovery Training (SMART) sponsors face-to-face and daily online meetings for addiction recovery. Online message boards and 24/7 chat rooms are excellent forums to learn about SMART Recovery and obtain addiction recovery support. Registration at message board is required for online meetings.

COVID-19 UPDATE: Fully operational throughout. Please check website often for updates.

• Alcohol Use Disorder Support Groups
• Drug 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

• 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.

Engages, educates, and empowers young people to prevent and end abusive relationships by offering support, information, referrals, and advocacy to those youth who have questions or concerns about their dating relationships, regardless of sexual orientation (including LGBTQ). Utilizes free and confidential phone, live chat, and texting services, which are available all year 24/7.

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

Provides information on paralysis related questions and referrals.

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

Services Include:

• Assistive Technology Training
• Disease/Disability Information
• Information and Referral

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

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

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.

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

Improving the lives of women and men living with the disease of infertility by providing free support to anyone in need, advocating for increased access to all family building options, and reducing the stigma of this disease through public education.

• Specialized Information and Referral
• Infertility Support Groups

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

An online-only resource for families and medical professionals who deal with the challenges of Asperger Syndrome, Autism, and Pervasive Developmental Disorder / Not Otherwise Specified. (PDD/NOS)

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

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.