Provides the XP family with support, advocacy, information and protection while promoting research. (Offers a summer camp for XP families Camp Sundown).
Information and resources for parents of children from birth to age 3 years.
Generates and promotes new knowledge to improve the ability of people with disabilities to perform activities of their choice in the community.
A non-profit organization that helps children and young adults 21 years and younger with disabilities obtain medical equipment or services that is not provided by their insurance companies.
A non-profit to raise money and awareness for bi-lateral hip dysplasia. Runners are matched with someone to run for and dedicate their runs and workouts to that individual.
Supports research and the development of the most up-to-date educational materials regarding Williams syndrome.
For teens also faced with a severe life-limiting medical con- dition, the transition from childhood to adulthood can be especially challenging. Wish Upon a Teen offers creative social opportunities such as spa days, family outings, new room design and more.
Online database of articles written by parents of young children with visual impairments or multiple disabilities, as well as links to resources and ways to connect with other families.
Empowering individuals with disabilities through year-round, statewide sports and recreation.
Offers medical information, patient information, and family support for individuals affected by Von Hippel-Lindau Disease.
Alert bulletin on issues going on in Washington DC and how they will affect people with disabilities.
Waterville Valley Adaptive Sports is dedicated to empowering individuals with disabilities through access and instruction in sports and recreation for life.
Immediate educational, emotional and financial support to fam- ilies with a diagnosis of Twin-to-Twin Transfusion Syndrome.
A forum where those affected by the disease can work together with medical professionals to better understand the condition.
A UCP initiative for children and youth with disabilities and chronic illnesses, providing an online social networking commu- nity, and information on conditions and diagnoses.
Offers an information and referral service, legislative advocacy, technology initiatives and research programs to consumers and families of children with Cerebral Palsy.
Offers grants of up to $5,000 for families of children with critical healthcare treatment, services, or equipment not covered or not fully covered by their parents’ health benefit plans.
Provides patients and family with information about diseases and identifying resources at the same time that promotes educa- tion and research about Leukodystrophy.
Promotes research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to af- fected individuals and families.
Aims to increase acceptance of those with disabilities through hands-on classroom activities with 3rd and 5th grade curricu- lum.
Offers support, advice and information on the challenges that families face when there is no diagnosis.
Focuses on improving the quality of life for people living with spinal cord injuries and disorders. Services include a newsletter, peer support, and accessibility consultations.
Educational programming, online training, and local chapters to prevent brain, spinal cord, and other traumatic injuries.
Supports individuals facing physical, cognitive, emotional, be- havioral and learning challenges.
Information and referrals, adult and parent support groups, kids group, lending library, advocacy services, newsletter, and physi- cian referral service.
Online support to assure quality home care for children with tracheostomies and facilitate parent-to-parent support.
Maximizes professional development opportunities for sec- ondary transition, college, and career readiness of youth with disabilities.
Website offers a comprehensive collection of Stories of Hope, patient resources, information about each step in the Transplant process, and links to support groups across the country.
A national, free service of mobile barbers and hairstylists who travel to residences and provide in-home hair care for people who are elderly or disabled.
Support organization for Trisomy 18, 13, and related disorders; offers support for parents who have children with chromosome disorder and education to families and professionals.
On-line resources for families and professionals, research, advo- cacy, educational info, photos, and volunteer opportunities.
Offers information on policies, procedures and what to expect at airport security specifically for passengers with disabilities who want to prepare for the screening process prior to flying.
Dedicated to finding a cure for Tuberous Sclerosis while improv- ing the lives of those affected; offers information and resources with online support and in-person support groups.
Helps people talk about their wishes for end-of-life care. Website includes a helpful Starter Kit.
Supports caregivers of children with special healthcare needs; offers information, equipment program, and grants.
Families who have a child with cancer may apply for financial assistance to help pay for mileage, airfare and lodging when their child needs to stay near the hospital for treatment.
Families who have a child that has been inpatient for 30 days within a month may apply for $300 to pay for expenses including rent, mortgage, utilities, childcare, prescriptions, etc.
Dedicated to helping children obtain the medical supplies and equipment they desperately need.
Provides well-trained therapy dog teams for visitation to nursing facilities, hospitals, rehab centers, schools and other locations where they provide therapeutic contact with the elderly, the disabled, or the young.
Raises money for school districts around the country to address and eliminate the ongoing bullying problem. Students can call LIFELINE at 1-800-273-8255.
Dedicated to prevention, diagnosis and treatment to save lives from stroke, helps people better understand and avoid stroke, guides healthcare professionals and provides information to enhance the quality of life for stroke survivors.
Support and opportunities to individuals and providers im- pacted by a port wine birthmark and related conditions such as Sturge-Weber syndrome and Klippel-Trenaunay.
Online resources, services and support to those who stutter and their families, as well as support for research into the causes of stuttering and training programs for professionals.
Provides information and resources for families in need of a speech & language pathologist with expertise in dysphagia or swallowing disorders.
Dedicated to educating, empowering and supporting families affected by autism.
Gives children living with Cystic Fibrosis and their family the oppor- tunity to “take a breather” from everyday emotional, financial, and spiritual stresses caused by their disease. Creating smiles, laughter, and magical memories is our goal.
Dedicated to improve the level of understanding, diagnosis and treatment of Tarlov cysts.
International association for people with disabilities, their family members, other advocates and professionals who work together to create a more inclusive society.
Maintains the national temporal bone registry, offers activities in the field of human temporal bone and auditory brain stem study; and provides updates on temporal bone donation or research.
Regulates, tests and registers therapy dogs and handlers for the purpose of visiting nursing homes, hospitals, etc.
Promotes research, education and communication among ther- apists and others using the horse in a treatment approach based on principles of hippotherapy.
The SPD Foundation is a world leader in research, education and advocacy for Sensory Processing Disorder.
A charity organization affiliated with an array of non-profit organizations; runs its own Wheelchair Assistance Program.
National organization of attorneys dedicated to planning for people with special needs; provides information and support through the website and written materials.
Information, support networks, and resource center for individu- als with spinal cord injury and their families.
Support, training, and resources to assist organizations and indi- viduals to develop suicide prevention programs, and to advance the National Strategy for Suicide Prevention.
This initiative is spearheaded by the Association for Behavioral Health and Wellness (ABHW), to reduce the stigma surrounding mental illness and substance use disorders.
Provides hearing aids to people with limited financial resourc- es, and promotes hearing health awareness while supporting research and education.
Provides hearing aids to people with limited financial resources; promotes hearing health awareness, research and education.
