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I urge you all to join the ‘Rare Dementia Registry’ of the Phoenix Chapter of the Alzheimers’ Association, NORD’s Rare Disease Registry and if you have e-mail capability, join The CBGD Online Support E-mail List . Details follow. The more CBGD people on these lists the more attention we will attract. We need attention in order to encourage medical research in CBGD. It will also be another avenue for you to use in soliciting advice, assistance and support and in providing the same to others. It is extremely important that ex-caregivers join because we have the experience and knowledge that others are searching for.

CBGD Online Support E-mail List
A mailing list created for anyone affected by CBGD (Corticobasal Ganglionic Degeneration) a rare progressive degenerative brain disease. I hope this mailing list will make it easier to communicate with others who are also dealing with this disease. I remember the first time I spoke with someone else dealing with this disease was that I/my dad wasn't alone! Someone finally could relate to what was happening. Please join in!

You can join this list by going to the following web page:
There are approximately 450 subscribers as of March 17, 2004.

Kristine Manion
List Manager

Note: Please join, there is no charge for anything.

National Organization for Rare Disorders, Inc
NORD* PO Box 8923# New Fairfield, CT. 06812-8923
(203) 746-6518 FAX (203) 746-6481
e-mail: orphan@raredis.org

Nord maintains a Rare Disease Registry which includes CBGD. Contact them for specifics.