Here are links you may find helpful:
Lymphatic Research Foundation
REGISTER to be counted. The more registered people there are the greater the awareness of lymphedema will be. This will allow the Foundation to get a more accurate count of the number of people affected by lymphedema. With real numbers they can push for more research, funding and answers for treatment, intervention and prevention of lymphedema.
Out of the Atlanta, Georgia area this non-profit organization
The Lymphoedema Support Network United Kingdom-based website