National Support Services, Disab/Diag

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.

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.

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including 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.

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.

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.

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.

Addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. Annual Family Retreat & Educational Symposium is held each June to provide an opportunity to interact with others who have endured similar experiences.

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 resources and support for individuals and families living with Angelman Syndrome. Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. 

Angelman Collaborative Research Partnership- notes two studies, one related to identifying biomarkers that could be used to assess the effects of drugs on AS and the other evaluating measures and technologies related to problems areas such as sleep, communication, and brain activity.

Angelman Syndrome Foundation Contact Registry- asks for contact and demographic data for individuals with Angelman syndrome and their families so they can: notify potential participants about Angelman research trials and alert families about recent events and research findings.

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

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

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.

24/7 peer-support helpline for mothers of children with special needs. Offers peer support, clinical assessment, database of trained service providers, support groups.

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.

Provides information and resources about dyslexia, including handbooks, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.

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

Promotes quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices (a family-led organization) has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.

Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.

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

Provides free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community, through a replicable playhouse model. Multiple locations throughout the U.S.

Suicide prevention and mental illness; equipping America’s teens and young adults with the skills and support they need to grow into healthy, thriving adults.
Help schools evaluate and strengthen their mental health, substance abuse and suicide prevention programs and systems to safeguard individual and community health.
Develop expert resources and create powerful partnerships to ensure more teens and young adults get access to the resources and support they need to navigate life’s challenges.
Educate and equip students, families and communities to know when and how to support others who are in distress or struggling with a mental health issue.

Kesem is a nationwide community, driven by passionate college student leaders, that supports children through and beyond their parent’s cancer. Offering innovative, fun-­filled programs that foster a lasting community, we aim to ensure that every child impacted by a parent’s cancer is never alone.

Camp locator on website

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

Provides support and resources to improve the lives of people with tuberous sclerosis complex (TCS). Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources. Conducts research on cerebral palsy.

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

Undiagnosed Diseases Network (UDN) is a research study that seeks to provide answers for patients and families affected by mysterious conditions. Clinical sites located throughout the U.S.

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.

• 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

• 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

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

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

Provides a consumer kit which includes a booklet on hearing loss and hearing aids and a listing of qualified hearing instrument specialists in the area.

• Hearing Aids

• Specialized Information and Referral
• Prescription Drug Discount Cards

• Planning/Coordinating/Advisory Groups

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

The National Children's Cancer Society (NCCS) provides emotional, financial, and educational support to children with cancer and their families and survivors. NCCS provides a Family Support Program, Transportation Assistance Fund, and Emergency Assistance Fund to support families throughout the United States during their child's cancer treatment.

• Incidental Medical Expense Assistance

A national advocacy and public policy center for individuals with down syndrome. Has more than 300 local organizations that serve the Down Syndrome community.

Services Include:

• New parent support and education
• Family meetings, sibling and grandparent support
• Recreational activities
• Lending libraries
• Helplines
• Regional conferences
• Partnerships with Down syndrome clinics
• Training for medical professionals and educators
• Advocacy
• Buddy Walks

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

Internet based resource

Is 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: Please Call before visiting the office. Following all CDC and state guidelines.

• 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.

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.

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.

Provides a community of people with mental illness who are working together toward a common goal, to get their lives back. Helps open new Clubhouses, accredits Clubhouses, trains and mentors new and mature Clubhouses, educates the public, advocates for government funding, and conducts research.

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.

Advocates for all persons who are deaf-blind of any chronological age and cognitive ability.

Services Include:

• Advocates
• Fosters family-to-family relationships
• Promote partnerships
• Provides information and resources
• Offers training opportunities
• Promotes Deaf-Blind awareness
• Builds family leaders

Works to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Provides community support, information, and advocacy to advocacy to families, survivors, and friends who have been affected by childhood and adolescent cancer.

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

• Individual Advocacy
• Information and Referral
• Equipment Distribution Program by application

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

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

Promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Hosts a national network for bowel and urinary diversion support groups in the United States. 

Increase awareness of myasthenia gravis (MG), supports those living with MG and creates connections for the MG community.

Services Include:

• Adult Education
• Co-Parenting Workshops
• Individual Counseling
• Information and Referral
• Parent Support Groups
• Peer Counseling
• Support Groups
• Supported Living Services for Adults with Disabilities

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

Services Include:

• Information and Referral
• Library Services
• Parent Support Groups

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

Provides information about Guillain-Barre Syndrome an inflammatory disorder in which the body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Services Include:

• Co-Parenting Workshops
• Family Support Centers/Outreach
• Parent Support Groups
• Peer Counseling

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.

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).

Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs.

Services Include:

• An equipment pool loans medical equipment free of charge
• Annual conference
• Web-based location finder for support in your area

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

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

• Informational Guides
• Virtual community
• Local chapters
• Fundraising and social events

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 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.

National Alliance for Caregiving (NAC) provides resources for advocacy and research as well as resources for professionals, caregivers, and others.

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.  Includes information on cerebral palsy caused by medical malpractice, and resources to help families find support and compensation.