While not directly related to the syndrome, these organizations can be of assistance to families having a handicapped child.
With more than 1,100 affiliated chapters and 140,000 members across the United States, The Arc is the country's largest voluntary organization committed to the welfare of all children and adults with intellectual and developmental disabilities and their families. The Arc, with its rich history in advocacy and services, is comprised of individuals with intellectual and developmental disabilities, family members, and professionals in the field of disability and other concerned citizens. The Arc has adopted various positions on issues that affect people with disabilities and their families, and the organization's mission statement forms the basis for the organization's activities.
GENETIC ALLIANCE (formerly The Alliance of Genetic Support Groups)
Genetic Alliance is a non-profit organization dedicated to helping individuals and families who have genetic disorders. Our toll-free helpline is a resource for consumers and professionals who are looking for genetic support groups and genetic services.
NORD is the only organization of its kind--a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families--as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities--rely on NORD's assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its our donors.
The Association for the Neurologically Disabled of Canada (A.N.D. Canada) is a Canadian non-profit charitable organization. We dedicate ourselves to providing functional rehabilitation programs to individuals with non-progressive neurological disabilities. With the help of A.N.D., higher achievement is within reach. Our goal is to help the neurologically disabled reach their full potential by treating the cause of the neurological disability rather than the symptom. Our unique home-based, non-institutionalized rehabilitation program attempts to stimulate the brain's ability to develop despite injury or inadequate development. It is a program which is individualized to meet the needs of each client and the abilities of each family.
This website lists all the Parent to Parent programs by state. Many times they have been able to match parents of children with CdCS with support parents across the county. Parent to Parent programs are great sources of local information, connections, programs, resources and knowledge you only get from other families.
Viewpoint Mobility, L.L.C.
1815 Palmer St.
Kalamazoo, MI 49001 USA
Tel: 877-368-6022 Fax: 269-344-5649
3190 Ridgeway Drive, Unit 17
Mississauga, ON, L5L5 S8 CANADA
Tel: 905-828-1996 Tel: 800-561-9600
Maker of North America's best wheelchair accessible minivan, "The Vision", a rear-entry, lowered floor modification that is seamlessly engineered to make Daimler-Chrysler, Ford, and General Motors minivans as barrier-free as possible.
National Suicide Prevention Hotline
This is a 24-hour, toll free, suicide prevention service available to anyone in suicidal crisis.