Statewide

Services Provided:

• Technical assistance and training in the areas of Early Intervention Early Intervention, infant mental health and trauma-based care practices, inclusive practices in schools, Positive Behavioral Interventions and Supports and Multi-Tiered Systems of Supports in schools, learners with low incidence disabilities (vision, hearing, deaf-blindness) Dual Sensory, transition from high school , and community-based employment strategies for youth and adults.
• Services include:
o Instruction and mobility services to children who are blind or visually impaired.
o Educational Advocates for students with disabilities who are in state care.
o Benefits counseling and assistance for Social Security beneficiaries.
o Family support and navigation of services.
o Support group for self-directed support users (DDD)
o Plan writing for self-directed support users (DDD).
o Support for parents with intellectual disabilities.
o Support to students in post-secondary education.

Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center for Excellence in Developmental Disabilities (UCEDD). UCEDDs are evidence driven and designed to advance policies, practices, and research that improve the health, education, social, and economic well-being of people with disabilities, their families, and their communities. There are 67 UCEDD programs in the United States. This national network is administered through the United States Department of Health and Human Services Administration on Developmental Disabilities.
The Sherlock Center partners with state and national agencies, schools, institutions of higher education and community providers to implement its core functions: preservice preparation, services (including technical assistance, community education, and direct services), research, and information dissemination. As of 2016, the Sherlock Center is a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Program.
Areas of Emphasis:
Early Childhood and Education
Inclusion and Community Membership
Low Incidence Disabilities
Self-Determination
Transition, Employment and Adult Life
Workforce and Professional Development

A Comprehensive and Current Overview Guide to Assistance

Targeted guides are available for specific populations including the following:

Programs for Adults with and without children living with them

Programs for Families with children under 18 living with them

Policy and Advocacy

Webinars

The Economic Progress Institute is a nonpartisan research and policy organization dedicated to improving the economic well-being of low- and modest-income Rhode Islanders. The Assistance Guides provide information about government assistance programs and community-based resources that help low- and modest-income Rhode Islanders meet basic needs. The Assistance Guides provides a general overview, eligibility rules and application information for each program in the areas of Income Supports, Food Assistance, Health Care, Child Care, Housing, Utilities and Tax Credits.

Accessible Rhode Island is a website that lists restaurants, museums, cinemas and cultural sites in Rhode Island that have been surveyed according to the guidelines for identifying accessibility outlined in the Americans with Disabilities Act of 1990.

The purpose of Accessible Rhode Island is to inform and inspire those persons living with disabilities, and to enlighten the rest of us to their needs. A project of the MS Dream Center.

• Resource Center
• Education and Training
• Family Programs and Support
• Peer Support Groups
• Camps link
• Camp Matty RI link

Epilepsy Foundation New England is a 501 c 3 nonprofit organization whose mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. Epilepsy Foundation New England is an independent affiliate of Epilepsy Foundation of America; we serve the approximately 100,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island affected by epilepsy and the people who care for them. Our vision statement is Help for Today, Hope for Tomorrow.

Call 2-1-1
2-1-1 Rhode Island is a repository of information about services available in Rhode Island including child care, basic needs, care for elderly and help for a gambling addiction.

Outreach van 2-1-1 will connect you and your community with the help and human services you need.

Individuals can ask for help by phone, searching the website or chatting.

Get help with 2-1-1, your free and confidential resource for assistance with housing, food, childcare—and needs well beyond. Call or chat now to get connected right away. Our specialists are available for you 24-hours a day, 365 days a year.

Because 90,000 households in Rhode Island are struggling to meet basic needs, we help families with the essentials.

We believe not only in helping people through an immediate crisis, but also in funding programs that help people develop the tools they need to provide for themselves and their families. And we provide one place for everyone to call when they need help.

HERSCOT CENTER
It is important for all individuals with tuberous sclerosis complex (TSC) to be monitored throughout their life for possible medical complications from the disorder. The Herscot Center offers coordinated care by providing access to a wide range of physicians who specialize in treating TSC.
Features:
Nurse Care Coordination
Social worker
Specialists in neurology, radiology, psychiatry,ophthalmology, skin,heart,lung and eyes.

The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at Massachusetts General Hospital delivers specialized care for individuals suffering from Tuberous Sclerosis Complex.
For more information about tuberous sclerosis complex, visit the Herscot Center's Living with TSC website. [https://www.massgeneral.org/tsc/]

Healthcare providers can call the referral line Monday-Friday 8:00 am-4:00 pm

Referral line for providers that treat pregnant and postpartum women.
401-430-2800

About RI MomsPRN

The Rhode Island Maternal Psychiatry Resource Network (RI MomsPRN) is a free psychiatric telephone consultation service for health care providers who treat pregnant and postpartum women. RI MomsPRN is a collaborative project between the Rhode Island Department of Health (RIDOH) and Women & Infants Center for Women’s Behavioral Health, funded by a five-year grant from the U.S. Health Resources and Services Administration (HRSA).

It was established to build the capacity of providers to screen for behavioral health and substance use disorders in their pregnant and postpartum patients, and respond with appropriate treatment and referral. 

• Education and Training link
• Parents link
• Concussion Information link
• Getting Treatment link
• Support Groups link

On-Site Resource Center

MONDAY – FRIDAY 9:00 – 4:30
EVENINGS BY APPOINTMENT
PHONE: (401) 228-3319

The Brain Injury Association of Rhode Island is dedicated to increasing awareness of brain injury and its consequences, providing education to prevent brain injury, and enhancing the quality of life for those affected by brain injury.

The Brain Injury Association of Rhode Island, Inc. is a public, nonprofit corporation, tax exempt under Section 501(c)(3) of the Internal Revenue Code, and is a chartered affiliate of the Brain Injury Association of America.

NERGN helps to find a genetic clinic near you and provides resources regarding educational and health care transitions as they move from pediatric to adult services. 

NERGN aims to improve health equity and health outcomes in individuals with genetic conditions, reduce morbidity and mortality caused by genetic conditions, and to improve the quality of coordinated and comprehensive genetic services to children and their families. 

Rare Connections Support groups link

 Virtual Patient & Caregiver Support Groups to provide opportunities for adult patients and for caregivers to come together and share their experiences with others facing similar challenges. 

Rare New England's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources,
and build foundations for support to improve patient quality of life. 

None required.

A safe space reflective of the Black, Indigenous and People Of Color birthing community to support their perinatal and maternal health in our communities. Our services focus on addressing inequitable and unjust adverse outcomes through collective, intentional care, with racial and cultural representation and services. 

• Insurance-Based Doula Referral Hotline & Network
• Childbirth Education Classes
• Community Donor Milk (Depot & Dispensary)
• Pregnancy Confirmation & Prenatal Gap Cafe Support

TeethFirst! is a collaborative group that promotes early dental visits for very young children in Rhode Island. They can help you find a dentist for your children, explain dental coverage, and encourage early dental visits that put our children on a path to healthy smiles for a lifetime. 

TeethFirst! promotes early dental visits for very young children in Rhode Island.   

TeethFirst! believes

• Early dental visits put our children on a path to healthy smiles for a lifetime
• It’s never too soon for dentists and families to team up--making a child’s first teeth a priority from the start
• Great healthcare requires a team – and dentists are part of everyone’s health care team
• It takes a community working together to keep our little ones healthy

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

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

Works to "prevent shaken baby syndrome and promote the well-being of infants generally through the development and implementation of programs, policy and research; and to support and educate families, caregivers and professionals.”

Provides information, training, and technical assistance for parents and professionals to meet the needs of deaf and hard of hearing students from birth 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. Provides links to descriptions of clinical trials, related to numerous mental health conditions, including ADHD, anxiety, and depression.

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.

Deaf and hard of hearing individuals

Provide a “green” way of providing Sign Language interpreting. All that is required is a computer/webcam, access to high speed internet and to download free webconferencing software. The hearing employer, doctor, counselor, school etc., pays for the service to be in compliance with the Americans with Disabilities Act.

computer/webcam based service

Provided advocacy and expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. A significant Learning Center, Resources, and specifically for Students and Young Adults.

Provided advocacy for the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.

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

Dedicated to improving health care transition supports for youth moving into the adult health care system, offers education, resources, tools, and state policy advocacy for youth, families, providers, and states. The Six Core Elements of Health Care Transition 2.0 define the basic components of health care transition support.

See resources on http://gottransition.org

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.

Provides educational information, resources and inspiring stories for families of children and adults with disabilities and special healthcare needs as well as healthcare and educational professionals. The digital version and newsletter are available for free, by signing up at www.epmagazine.com (EP for Free). 

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

Provides information, resources and support to those impacted by a child with the anxiety disorder known as Selective Mutism (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

Provides the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future. Includes research about the condition and medication trials.

For patients or caregivers, advocacy groups, health care providers, and supporters.

Offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars

National, web-based locator for services

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.

Provides support and connections in the myotonic dystrophy community, resources, advocacy, and research toward treatments and a cure.

Services Include:

• A digital library of educational videos
• Study and Trial Resource Center
• Find a doctor nationwide locator
• Support groups, including a virtual group

Provides a resource for 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.

People with disabilities, their parents, teachers, and other professionals

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 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

Kidney patients and health care professionals.

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

Free credit reports available to everyone yearly.

• Credit Reporting Agencies

Individuals with ADHD and their families

• 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

No restrictions

• Specialized Information and Referral

Provides resources and information to assist caregivers.

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

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

Services Include:

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

Anyone looking for health insurance under the Affordable Care Act (ACA). Specifically for those who currently don't have health coverage or looking to change plans.

• General Health Insurance Information/Counseling

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

• Patient/Family Housing
• Specialized Information and Referral

Cancer patients

• Specialized Information and Referral
• Prescription Drug Discount Cards

A non-profit organization working in the areas of support, awareness, advocacy, referral, education, and prevention for people, their families and friends struggling with eating disorders. Also provides resources for families, schools and the eating disorder community. Services include recovery mentorship, support groups, an annual conference and a YouTube recovery channel. Related volunteer service opportunities available.

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

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

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

A program of CHADD providing an online clearinghouse for the latest evidence-based information and resources on ADHD through support groups and specialized information and referral.

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

Anyone seeking health information or referral.

Provides national resources and information about women’s health as well as an information and referral helpline.

• Specialized Information and Referral

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

• 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

Individuals who are blind or visually impaired, their families, friends, doctors, caregivers, and anyone who works with blind or visually impaired individuals.

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.

Operating a 24/7 text, phone, and live chat service. Offers education, support and advocacy to those involved in dating abuse relationships as well as concerned friends and family. Website also offers information on dating basics, healthy relationships, types of abuse, and how to get help for yourself or someone else.

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.

Individuals and families affected by eating disorders.

Provides information and treatment options for eating disorders.

Contact for specific information.

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

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

Chapter Finder: Find support and connection in your community.

HRSA assures the availability of quality health care to low income, uninsured, isolated, vulnerable, and special needs populations in order to meet their unique health care needs.

[https://bphc.hrsa.gov/ Bureau of Primary Health Care] has information about health center training and funding. There is also a [https://findahealthcenter.hrsa.gov/ Health Centers Locator].

Provides information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

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

Contact for specific information.

Provides a national patient hotline for organ transplantation information. Donor cards, booklets, brochures and lists of transplant centers are available. Patient information packets on specific organs are available.

Provides information on physical activity, health promotion, and disability, serving persons with physical, sensory and cognitive disability across the lifespan. 

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. Provides a patient and family registry plus a longitudinal database populated by clinician- and parent-reported data from individuals living with FXS.

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 services, education, outreach, and advocacy so that children with disabilities are given full access to quality education, support, and resources.

Services Include:

• Early Intervention
• Early Childhood Education
• Make the First Five Count Childhood Development Screening Tool
• Nationwide Directory for Inclusive Child Care Programs
• Camping and Recreation Programs
• Family Support and Resources
• Transportation Assistance and Support
• Employment and Training
• Financial Capability and Homebuying

Supports 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.

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.

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.

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

Patients and families of children with congenital heart disease.

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.

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).

Provides of informational materials on spondylitis.

Services Include:

• Find a Rheumatologist Directory
• Accessibility Information
• Support Groups

Thyroid cancer patients, survivors, caregivers and medical professionals.

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

Those affected by scleroderma and their families.

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.

The Center for Disease and Control national coronavirus website provides up-to-date information about the coronavirus, including prevention, preparedness, travel restrictions, and response including stimulus payments.For those experiencing symptoms or who are concerned about exposure to the virus, please call local coronavirus information lines and/or telehealth lines.

• COVID-19 Control
• Temporary Financial Assistance

• 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

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.

Provides a basic guide for parents of children with chronic health issues, disabilities and special needs.

A collaborative network of nonprofits, corporations, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community.  They work together around the interests of: Advocacy, Awareness, Research & Treatment, Family Support, and Survivorship.

The Hope Portal is a searchable database which connects childhood cancer families to the information and vast array of support resources