Health/Physical Illness: Genetic Disorders/Syndromes

Christopher and Dana Reeve Foundation

The Reeve Foundation’s Living with Paralysis and Caring for a Family Member Living with Paralysis support groups provide an opportunity for members to connect with others who understand what they are going through and to gain support, insight and guidance. Separate groups are held for individuals living with quadriplegia, those living with paraplegia, and family

Charcot Marie Tooth Association (CMTA)

Resource and For patients and families affected by Charcot-Marie-Tooth disorders (also known as peroneal muscular atrophy or hereditary motor sensory neuropathy). Referrals, newsletter, phone help, video tapes, support groups, and conferences. Please call for group times as they vary.

Down Syndrome Society of Wichita

The mission of the Down Syndrome Society of Wichita is to enhance the lives of individuals with Down syndrome and their families by providing them with support and resources and by raising public awareness about Down syndrome.

National Foundation for Ectodermal Dysplasias (NFED)

Information, Education, Research, Resources, and Advocacy for those with different types of ectodermal dysplasias and their families. Connection to other families like yours.

National Fragile X Foundation

Promotes education and research regarding Fragile X syndrome, a hereditary condition which can cause learning problems in males and females and is the most common familial cause of mental impairment. Support, newsletter, information, and referrals.

Osteogenesis Imperfecta Foundation

For families dealing with OI. Public education and research support. Literature, quarterly newsletter, and telephone support network.

Mission MSA (Multiple System Atrophy)

Information on SDS and related disorders, coping strategies, and caregiving ideas. Includes a list of local support groups

Children’s Organ Transplant Association

COTA exists to assist patients who require a life-saving organ, bone marrow, cord blood or stem cell transplant. COTA works with any patient who needs a transplant due to a genetic disease such as Cystic Fibrosis or Sickle Cell Anemia, and all patients 21 and under for any disease complication. COTA guides the family and their

Dup15q Alliance

Provides family support and promotes awareness, research and targeted treatments for dup15q syndrome.

International Essential Tremor Foundation

Information and resources for people who face essential tremor, familial tremor, or hereditary tremor. Includes contact information for local support groups.