Dear Sir,
Please excuse me if this is an inappropriate place to post this question. I
need help disseminating this information:
PXE (pseudoxanthoma elasticum) International has a mailing list on the
Internet. To subscribe to the list one has to write a mail message to
majordomo@listserv.bc.edu and the body of the message should be
subscribe PXE username@hosr.domain
similarly
unsubscribe PXE username@hosr.domain
to get a list of participants
who PXE
Now to post to the list the message should be sent to PXE@listserv.bc.edu
We have established this list to provide a place for people interested in PXE
to discuss the disorder, its medical implications, advances in research and
possible treatments.
The list is owned by Sharon Terry (Tshar@aol.com). I am also president of
PXE International, which seeks to support research for PXE. To that end we
have begun compiling an international registry and database. If you know of
any person affected by PXE please ask them to contact me through my internet
address (Tshar@aol.com) or by snail mail: Sharon Terry, President/PXE
International, Inc./23 Mountain Street/Sharon, MA 02067/617-784-8006.
Thank you!
Sharon Terry