Parent volunteers will call and provide information and support to families.
Focus is peer support, condition-specific health information, resources related to living with immune deficiency, college schol- arship program.
Relative to the 185+ conditions in this category, offers an array of materials, online resources, family networking through P2P, local networks, and a biennial national conference.
Dedicated to providing information to families, sponsoring research, and fostering partnerships to raise awareness. Hosts an active parent-to-parent network.
Dedicated to finding a cure and effective treatments for Progeria; offers information, resources, and support through their website and community activities.
Dedicated to the needs of those born with an ano-rectal malfor- mation or colon disease and any of the associated diagnoses.
A community of support and information; organizes an annual PVNH Disorder Awareness Day. PVNH is a rare neuronal migra- tion disorder.
Provides information and support, quarterly parent support groups, family events, conferences, parent sharing list of parents who can be contacted for support, and newsletter.
Dedicated to raising awareness about the benefit of early detection and early therapy for children with physical movement differences; parent-answered toll-free line providing help.
Provides free health care advocacy services to patients with life- threatening and serious illness and their families.
Offers support services and a comprehensive website with patient and public education, peer support through active discussion boards, and research and advocacy supports.
Offers individualized education programs for children ages 0-22 with blindness, visual impairment, and deafblindness, including additional disabilities.
Technical assistance and consultation relative to “effective prac- tices” in deaf-blind education.
Provides information and emotional support to patients of all ages and their families and comprehensive downloadable, free resources. Patient-to-Patient Support Line: 1-800-748-7274
Assists the families of children living with hepatitis, HIV/AIDS, or other chronic viral diseases by offering emotional, financial, and informational support.
A statewide network of families, local family support groups, and professionals who advocate on behalf of children and adoles- cents with mental, emotional or behavioral special needs, and their families.
Online support and resources, including suggested reading, developmental milestones, and support network.
Supports research, education, awareness, and mutual support through local network groups, chatrooms, e-newsletter, and comprehensive Information Center on website.
Information education and outreach for families with children and adults dependent on home parental IV-and/or enteral tube- fed- nutrition. Also offer supports in Dutch.
Funds a range of patient & family support programs that provide vital services designed to educate, empower and lift the spirits of pediatric cancer patients and their families.
Raises awareness of PANDAS/PANS through a comprehensive website with an ongoing database, research, newsletters, and scientific advisory board; hosts support groups and conferences.
Medical and support information and resources for families of children affected by Duchenne and Becker Muscular Dystrophy.
Raises public awareness and assists families who have children with Trisomy and related chromosome disorders. Fundraising events help to sponsor conferences and related activities.
Provides information for parents and an online discussion forum and helps families to network with each other.
Dedicated to eliminating birth defects caused by alcohol con- sumption during pregnancy and improving the quality of life for those affected individuals and families.
Community-based services to those confronting emotional difficulties, mental illness, developmental disabilities, substance abuse, or other challenges in daily living.
Dedicated to bringing hope and empowerment to the stuttering community, professionals, and the general public. Education, training, support, friendship, and information.
Genetic counselors work as members of a health care team pro- viding information and support to families who have members with birth defects of genetic disorders and to families who may be at risk.
Dedicated to the identification, treatment, and cure of urea cycle disorders, providing information and education for families and healthcare professionals.
Consortium of genetic service providers and consumers of genetic services promote health by increasing the awareness of genetic concerns, the understanding of the role of genetics in health care, and the availability of appropriate services.
Peer support to children and adults who have had a limb am- putation and their families; periodic community meetings and events, Peer Visiting Program, and resource-sharing.
Empowers those with bleeding disorders through education, advocacy, and supports. Hosts a variety of activities, offers assis- tance and scholarships, and advocacy efforts.
Offers education, resources, and in-person activities and events for young people coping with serious illness, including cancer, HIV/AIDS, sickle cell disease, and metabolic and mitochondrial disorders.
A nonprofit, volunteer-based family association.National network of families focusing on issues of deaf-blindness.
Help to families dealing with ectodermal dysplasia. Regional and national educational publications and newsletter. Financial assistance to qualified families for medical and dental items.
Comprehensive website leads to organizational resources on diagnosis, treatments, and resources.
Information specialists help locate NIH materials and other sources of medical information. Publications include information about NIAMS-sponsored research and are updatedperiodically.
Compilation of information related to hearing and deafness; balance; smell and taste; voice, speech, and language.
Information dissemination to increase knowledge about diges- tive diseases. Works to identify and respond to informational needs about digestive diseases.
Information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.
The mission of the NDSS is to benefit people with Down syn- drome and their families through national leadership in educa- tion, research, and advocacy.
Information and support for families of people with autism; supports a par- ent/professional network, facilitates a parent support group.
Provides support and services to families affected with PKU and allied disorders, encourages research, and increases public awareness. Support network for parents and conferences.
Provides education training and support to individuals with de- velopmental disabilities: day habilitation and community based day support programs, residential services, school consultation, and home-based therapies.
Supports the medical community and caregivers of children with a Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS), and Pediatric Acute-on- set Neuropsychiatric Syndrome (PANS).
Information specific to the needs of above-the-knee, below-the- knee, and arm amputees; peer counseling, support, and medical equipment available.
Offers a variety of resources including free downloadable safety brochures, swimming program lists, Big Red Safety Toolkit, safety program grants, and community support lists.
Provides leadership and evidence-based resources to families, practitioners, policymakers, programs, and organizations. Offers parent trainings and houses an affiliated school with model classrooms.
Promotes achievement for children/youth who are deaf-blind and assists in addressing need for personnel with the skills and knowledge to serve children and youth who are deaf-blind.
National information clearinghouse for children birth-22 who are deaf and blind. Catalog and resource database, listings of specialists and consultants. Services are free.
Dedicated to expanding public understand and prevention of eating disorders and promoting access to quality treatment and support through education, advocacy, and research.
Mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
Information and comprehensive support services for individuals and families affected by multiple sclerosis.
Dedicated to providing support to families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA).
A comprehensive catalog of adult and children’s titles, literacy programs, Children’s Book Club, and downloadable PortaBooks (read through portable Braille machines or computers).
Online repository for information about rare medical or genetic conditions, research and medical trials, patient advocacy and travel groups, and reports to federal agencies.
Offers information about learning disabilities LD—through a comprehensive library of articles, advocacy guides, policy- relat- ed publications, checklists, worksheets, and forms.
Raises public awareness and enriches lives through autism- friendly interactive concerts specifically developed for children who have Autism and their families.
Works with families and autism-specific organizations to de- crease some of the financial burden through providing funding for programs that benefit an autistic child’s specific needs.
Educational services and financial assistance for low-income families so that individuals with autism may function inde- pendently and live life free of discomfort, anxiety and pain.