Coordinates and oversees local bike camps, to foster indepen- dent bike-riding skills for individuals with disabilities (ages 8 and up). Website includes materials on hosting a camp, recruiting volunteers, and coordinating publicity.
The Alliance for Technology Access provides information and support services to children and adults with disabilities.
Committed to leadership in education by developing and supporting leaders, strengthening School-Family-Community connections, and improving systems that serve children and youth through its programs.
International organization focused on GI issues in adults and children. Comprehensive website includes facts, symptoms, treatment and management, FAQs, and family resources.
Helps and supports parents of children with mosaic Down syndrome in meeting new people and research. The website includes education, support, and Family Connect, an online parent-to-parent program.
Provides information about Medicaid and the Children’s Health Insurance Program CHIP-for families seeking health insurance coverage for children and teens and families needing help locat- ing a dentist.
Dedicated to the study and treatment of dyslexia and related language-based learning differences. In addition, we fund research on neurological, educational and developmental issues as they relate to dyslexia.
Provides education, family support, advocacy, and funds research in the United States and worldwide. Provides online support group.
Dedicated to the support of research for the study of early onset bipolar disorder.
Hospitality houses ranging from small houses to houses with over 100 guest rooms. Additional members include the Ameri- can Cancer Society, St. Jude Children’s Research Hospital, Mercy Medical Angels, and Fisher House Foundation.
The HMDSN can help point families to support groups and other parent contacts in their area. Listservs are available for families of children or adults with Hirschsprungs Disease.
Offering help and hope through compassionate care to families living with Autism or Parkinson’s Disease.
Provides support, information and therapy tools for children and their families affected by a post birth brain injury.
An initiative of Handi Ramp, helps individuals and families find realtors who can assist in the search for a handicap accessible home or consultants who can modify a current home.
Volunteer architects design barrier-free home renovations that allow people to live with greater safety and freedom.
Web-based services to support the public’s need for a skilled workforce to provide these services, a clearinghouse on home modification with a search tool for resources, by state.
A volunteer self-help, not-for-profit support group forpersons and families dealing with Hermansky-Pudlak Syndrome HPS- and re- lated disorders, such as Chediak Higashi Syndrome.
Provides information and support to parents, patients, family members, caregivers, friends and professionals dealing with Krabbe Disease and related leukodystrophies.
Offers education, publications, resource library, and medical networks on its comprehensive website and emotional support through its growing network of HA Partners.
NHIC is a health information referral service that links consumers and health professionals with health questions to organizations best able to provide answers.
A nonpartisan policy resource and technical assistance center partnering with foundations, government agencies, school dis- tricts and providers to support school-connected initiatives.
Multilingual health information for refugees and their health care providers, offering a wide variety of materials in 100 lan- guages.
Largest national organization for people with hearing loss. Provides information, education, advocacy and support.
Answers questions on a broad range of topics: educational rights, treatment options, diagnostic procedures, and locating support and services.
Provides education, therapy and playground equipment, therapy toys, resources and scholarships for families and therapists in need of financial assistance and/or community support.
Provides support, services, education, and research on behalf of children and adults who have growth hormone deficiency due to genetic conditions, endocrine or metabolic disorders or diseases.
Raises public awareness, offers emotional support, and provides technical advice on educational, medical, and community mat- ters among families living with Rett Syndrome.
Empowers parents of premature babies through support, advo- cacy, and research to improve outcomes for their preemies and themselves.
Online database profiles 200,000 public, private and charter schools pre-K to grade 12; offers articles, worksheets and videos to help parents support learning at home.
Enriches the lives of those who have vision impairment or Autism Spectrum Disorder with trained dogs, for assistance, companion- ship, and emotional support.
Residential school for students with mental health issues, au- tism, developmental disabilities, and emotional and behavioral challenges, ages 6 to 22 years.
A free consulting service that works with real estate agents to help families that have a member with a disability select the right home.
A parent driven, parent/professional collaborative group dedicat- ed to supporting children who are deaf or hard of hearing and the professionals who serve them.
Supports identification and eventual prevention of rare genetic disorders and provides financial assistance to families coping with the many complications of these disorders.
of support. The peer-to-peer relationship offers support from someone who is familiar with the experience of preterm birth, life in the NICU, a child born with special health care needs, preg- nancy and/or infant loss.
The mission of NGF is to find a cure for Gaucher Disease by fund- ing research, promoting awareness and educational programs, and offering support groups and financial assistance.
Provides information, education and a network for patients affected by Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy and variants.
Provides information and support to parents, patients, family members, caregivers, friends and professionals dealing with Graves Disease or Thyroid Disorder.
Dedicated to recovery for children with autism spectrum disor- ders by providing guidance and support for medical treatment to directly improve the child’s quality of life.
A resource to connect families who face issues related to sex chromosomes. Offers online support & discussion groups, as well as reading lists and information about research.
Represents more than 600 consumer and health professional organizations, working together to improve the quality of life for everyone impacted by genetics.
Resource website to explain the concepts and provide resources around Palliative Care services, including Pediatric Palliative Care services around the country.
Advocates for improved access to care, diagnosis, early and in- novative medical intervention, long-term lifestyle improvement, and therapeutic compliance.
Provides consumer-friendly information about a large number of genetic conditions. Includes a resource guide on finding genetics professionals.
A rare genetic disease patient advocacy organization, centered on increasing rare disease awareness, public and physician edu- cation, building community, and supporting research.
Enhances the lives of children facing life-threatening and chronic illnesses by matching them with college athletic teams to create a support network of laughter, strength and support.
Online resource for parents including a PDF Guide to Tube Feed- ing and resource information about living with a feeding tube for families, daycare, and schools.
Links more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families.
A voluntary, non-profit organization dedicated to enhance the quality of life for those individuals and families affected by FG Syndrome or related disorders.
Provides funding for individual children under age 18-with health needs when insurance and other financial resources have been exhausted.
Dedicated to educating parents and pediatric professionals about the early warning signs of autism and other developmen- tal disorders.
Offers information and medical research, including a national family conference, on ichthyosis and related disorders. Also offers financial assistance.
Aids families who need assistance in caring for their children with autism; funds education and research into the causes and consequences of autism.
Provides resources, diagnosis, treatment and management, and living with food allergies; specific types of allergens; supports for severe allergies and research opportunities.
Provides grants to non-profit organizations and programs which assist, educate, counsel and comfort children, teens, young adults and their families after a loved one’s death.
Education awareness, resources and research regarding Fragile X syndrome. Extensive parent resources through website.
A national information system designed to provide ready access to an extensive body of education-related literature. Adminis- tered by the National Library of Education (NLE).
Website containing medical and cultural information about many immigrant and refugee groups. Cultures include: Cam- bodian, Chinese, Eritrean, Ethiopian, Hispanic/Latino, Hmong, Karen, Oromo, Somali, Somali Bantu, Tigrean and Vietnamese.
Dedicated to raising awareness of the need to screen, identify, and develop medical treatments and protocols to enhance the lives of those affected by rare diseases.
