In the United States The LAM Foundation, started in 1995, has been very successful in bringing LAM to the attention of important national bodies and in raising money for research, in addition to providing support for LAM patients. The National Institutes of Health in the United States (NIH) has a register of patients with LAM and assesses patients on a regular basis.
There is a register of LAM patients in France and in Japan and several countries now have self-help groups. Doctors and research workers from different countries with an interest in LAM meet and share information about LAM and collaborate with research. This is particularly important for a disease as rare as LAM. (See also Other Organisations and Resources)
Juliet Stevenson