Im Eric and 1 year ago I was diagnosed with Kennedys Disease. (KD)
Since then I have been on many Rare disease websites. A few of them have it listed, and one or two have actually got members with KD. Once again I am the first person to register on this site with KD. I started a group on Facebook and we now have 67 members. Our members include 12 Males with KD, 20 Female carriers, several people who have yet to be tested, and the rest are supporters and friends. Its a very open and friendly place and well worth joining.
The name of our group is;
Raising Awareness and a place to share experiences
The 'Kennedys Disease Association.org which is based in America, is definiteley the most up to date and informative website, and I would reccomend anyone with KD to join. They also raise funding for research and they have recently added a section called;
Great Britain Team - GB
We are also in the process of building a website which should be up and running very soon. Best wishes to you all. Eric Mager