Dysautonomia

Synonym: Familial Dysautonomia

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Dysautonomia"

Who to Contact

Dysautonomia Foundation, Inc. (DF)
633 Third Avenue, 12th Floor
New York, New York, USA, 10017
212-949-6644
E-mail: info@familialdysautonomia.org
Web: http://www.familialdysautonomia.org/

DF is a medical research organization with a focus on genetics and the search for the FD gene. Their goal is to increase understanding of all aspects of FD. They have local groups and support other groups wishing to start a local chapter.

They publish a twice yearly newsletter, DYS Course, and have a brochure " Are You the One" that provides an explanation of FD, and its symptons. A new parent packet contains " A Manual of Comprehensive Care", a letter of welcome and a history of the foundation. DF holds a yearly conference; call the Foundation for more details.

Where to Go to Chat with Others

• FD Patients
  FD Patients' Group This e-group is for FD patients (Familial Dysautonomia) which the main goal is to create friendships between the adults so that we can share our personal achievements, joys, as well as difficulties. To have contact, exchange ideas, problems, ideas, and whatever we want. Learn to cope with FD instead of fighting against it.

• FD Support
  An open site where families who are directly affected by Familial Dysautonomia can talk to each other and receive support by others in the same "boat". This is a safe, non-threatening environment.

Learn More About It

• What is Familial Dysautonomia?

• Human Chromosome Workshop Chromosome 9

• Familial Dysautonomia article from OMIM

• Familial dysautonomia - Genetics Home Reference
  
  
• Familial Dysautonomia from eMedicine

Web Sites

• Familial Dysautonomia Foundation

• National Dysautonomia Research Foundation (NDRF)

• Familial Dysautonomia Hope Foundation

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Last Updated July 6, 2007 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_dysa.htm