Health/Physical Illness: Genetic Disorders/Syndromes – Page 10

Dystonia Medical Research Foundation

Education, support groups, fund raising for research, newsletter, information, referrals, and conferences.

International Rett Syndrome Foundation (IRSF)

For parents, interested professionals, and others concerned with Rett Syndrome. Information and referrals, peer support among parents, and research encouragement. Newsletter.

National Hydrocephalus Foundation

Support and information for adults with hydrocephalus and for parents of children with hydrocephalus. Provides knowledge, education, support, and assists in finding medical care. We’re here when you need someone to share with.

PKD Foundation- Kansas City Chapter

These meetings are planned with YOU in mind. Guests are welcome.

Trisomy International Parent Support (9-TIPS)

9TIPS is an international support group for families dealing with Trisomy 9 covering all variations. This includes Trisomy 9p, Trisomy 9 Mosaic, Trisomy 9q etc. Our goal is to provide families with support through a parent network system, to share their successes and experiences with each other. Option to participate in a daily email listserv if

Chromosome 22 Central

Support for disorders of chromosome 22. We are here for you.

Dystrophic Epidermolysis Bullosa Research Association (DEBRA of America)

Support, information for families, research, education for professionals, pen pals, phone network, information, referrals, newsletter, and regional conferences. On Facebook.

Joubert Syndrome Foundation & Related Disorders

Mutual support and sharing of knowledge for parents of children with Joubert Syndrome. Aims to educate physicians and support teams. Information, networking list, newsletter, and annual conference.

National Lymphedema Network, Inc.

Support groups and information regarding primary and secondary lymphedema for patients and professionals. Information on the prevention and management of primary and secondary lymphedema.

Prader-Willi Syndrome Association

Support and education for parents of, and professionals in contact with, children who have Prader-Willi Syndrome. Bimonthly newsletter, several other publications, and chapter development kits available.