National Support Services, Disab/Diag

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.

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

Emotional and informational support for families of children who have special needs, Parent to Parent-USA (P2P-USA) is a national nonprofit organization committed to assuring access and quality in Parent to Parent support across the country. This site highlights state's organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices.

Promotes and funds research, provides education, and offers support to enhance the quality of life of those impacted by Prader-Willi syndrome. 

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.

Provides, information and support for parenteral nutrition consumers (HPN or home IV-fed patients) to improve their health and quality of life. Also offers a national list of Donated Equipment and Supplies and virtual support groups.

Provides support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. Website includes information on a variety of Endocrine Disorders.

An organization of parents who have children with endocrine disorders.

A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

A Kindering Center program

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.

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

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 assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials.

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.

Information about Fabry disease, research and clinical trials information, funding programs, and more. Programs, include:

• Annual conference
• Family camp
• Personal support
• Research and educational information

CareConnectPSS: Offering care management by the Sanofi Genzyme drug company. Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company.

Resources and support for individuals with limb loss and their families. Advocacy information and resources for state and national advocacy.

Paddy Rossbach Youth Camp: A 6-day traditional summer camp experience for children with limb loss and limb difference to increase self-confidence and self-esteem through a traditional and supportive summer camp experience. The Amputee Coalition arranges travel plans for all camp attendees. Cost: none! thanks to sponsors and donors. Opportunities for camp counselors ages 18-19 and age 20 and above.

2016 dates July 8 - 16.

Advocates for adults with autism and their families. Helps those with autism make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.

A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.

Additional Family Resources: Medical Cards, Family Map, CoRDS Registry, CdLS Discussion Board

M - F 8:30 - 5 ET

Providing resources to healthcare providers on environmental health concerns and benefits. Asthma study,"Integrating environmental management of asthma into pediatric health care."

NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Provides information about NAMI groups in all states, updated information about illnesses and medications, and sends out literature.

Provides programs to improve the lives of those affected by Duchenne. Provides free education, workshops, and webinars. Provides a web locator for certified therapy services.

Improves lives in the Glut1 Deficiency community through its mission of:

• increased awareness
• improved education
• advocacy for patients and families
• support and funding for research

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

Dedicated to raising awareness for 22q11.2 Deletion Syndrome while connecting, supporting and offering accurate information to families affected by the disorder. Provides a locator map for family connections, support groups and clinics.

Executive Director Lindsey Garcia

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.

• 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

Provides online, telephone, and in-person counseling, support groups, educational workshops, publications, financial, and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.

COVID-19 UPDATE: All services are available via telephone and online. Please call with any questions.

• Health/Disability Related Support Groups
• Medical Care Expense Assistance
• Disease/Disability Information

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 a comprehensive resource for accurate, up-to-date information, support, and acceptance to maximize the quality of life for individuals with 5p- and their families. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children. Also supports five Regional Family Get-Togethers per year.

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

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

A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.

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

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

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

Website serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.

COVID-19 UPDATE: Center for Parent Information and Resources continues to offer services through their website 24/7.

• Planning/Coordinating/Advisory Groups

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

• Incidental Medical Expense Assistance

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

A leading national non-profit working to prevent suicide through public awareness, education and training, program and product development, and providing support and resources for those touched by suicide.

COVID-19 UPDATE: Visitors are not allowed in the office and should call for answers to questions.

• Suicide Prevention Programs

• Health/Disability Related Support Groups

Provides a pediatric patient incentive program that help hospitalized kids confront the challenges of serious illness, adhere to their medical plans, and thrive.

Provides an online provider directory for lesbian, gay, bisexual, transgender or queer people looking for primary care providers, specialists, therapists, dentists and other health professionals.

Provides a searchable provider directory of medical providers for transgender health.

Formerly known as the Harry Benjamin International Gender Dysphoria Association (HBIGDA)

Provides information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.

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 CDC National Prevention Information Network (NPIN) is the U.S. reference, referral and distribution service for information on HIV/AIDS, viral hepatitis, sexually transmitted diseases (STDs) and tuberculosis (TB). NPIN produces, collects, catalogs, processes, stocks and disseminates materials and information on HIV/AIDS, viral hepatitis, STDs and TB to organizations and people working in those disease fields in international, national, state and local settings. All NPIN services are designed to facilitate sharing of information and resources on education and prevention services, published materials, research findings and trends among users.

Offers support services for parents who have a child with visual impairment. 

Services Include:

• Information and Referral
• Library Services
• Parent Support Groups

Hotline

Offers email, video phone, and live chat services. Video phone and live chat available 24/7/365.

ADWAS & hotline advocates offer many ways to support callers as we can:

• listen and provide emotional support
• provide information and referrals
• do domestic violence and sexual assault education
• brainstorm with callers ways to keep safe
• develop safety plans

Advocates can also work with Deaf and hearing friends and family members of Deaf survivors. Helpers can call us to learn more about intervention strategies and how to support survivors.

Support for Other Organizations

ADWAS also gives hearing domestic violence and sexual assault programs and shelters cultural training, support, education, and technical assistance to improve their accessibility for Deaf survivors. For shelters and programs that want training or information on working with Deaf survivors, they can contact us.

Information and Resources

Also offers a variety of resources, information, and support options for deaf survivors and their friends and families.

ADWAS, in Seattle, Washington, partners with the National Domestic Violence Hotline (NDVH), in Austin, Texas, to provide DV services in American Sign Language.

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).

Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.

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 Association for Creatine Deficiencies’ mission is to provide patient, family, and public education, to advocate for early diagnoses, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Offers information for patients and families, including online support groups, for clinicians, and about research.

Mission of Graham's Foundation is to support, comfort, inform, and guide families who experience a premature birth.

Programs:

• NICU, transition home, and remembrance care package programs
• Trained preemie parent mentors available 24/7 via email, phone, and text
• MyPreemie, the market-leading app for parents of premature babies
• Online communities with tens of thousands engaged parents making new connections

Provides support for people with Marfan Syndrome as well as family members. Meet as needed. Make referrals to a national organization. Refer people to other with Marfan. Moral support.

Marfan's Syndrome is an inherited condition of the connective tissues, bones, muscles, ligaments and skeletal structure whose symptoms include an irregular and unsteady gait and a tall, lean body type with long extremities including fingers and toes. There is an abnormal joint flexibility, flat feet, stooped shoulders, dislocation of the optic lens, and a weakened aorta.

Provides online hearing health resources related to product innovation, public policy, patient safety and education. Provides free online hearing checks.

Provides free educational materials, financial options, and emotional support for those affected by cerebral palsy.

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

• Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
• Promoting awareness about OCD and related disorders to the OCD community and the general public.
• Increasing access to effective treatment through:
  • Educating mental health professionals about evidence-based treatments.
  • Providing a forum for professional collaboration and networking.
  • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

Raises awareness of Klinefelter Syndrome by providing helpful resources and online forums for connection.

Resources Include:

• Podcast
• Documentary series
• Youtube channel
• Social media platforms

Cerebral Palsy Family Network (CPFN) is the world's largest online community for connecting and supporting families affected by cerebral palsy. Provides families with access to the educational, emotional, and financial resources.

Protection and Advocacy Systems (P&As) work at the state level to protect individuals with disabilities by empowering them and advocating on their behalf. There are 57 P&As in the United States and its territories, and each is independent of service-providing agencies in their states. Find local P&A Agency information at the bottom of this page.