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I urge you all to join the Rare Dementia Registry of the Phoenix Chapter of the Alzheimers Association, NORDs 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.
You can join this
list by going to the following web page:
Note: Please join, there is no charge for anything.
Nord maintains a Rare Disease
Registry which includes CBGD. Contact them for specifics.