Open by moderated subscription, this mailing list is part of the extensive set of public service and family support lists maintained at St. John's University, Jamaica, New York.
You can join the XLH Network, and be a part of the F-HYPDRR mailing list, by submitting the form found at our emerging professional web site: Join.
Alternatively, we find that a direct query to a list co-owner is now a slightly more indirect and time-consuming way of expediting subscriptions, but we'll also be happy to respond to a more formal query sent through the St. John's University listserv as described below.
Whatever you do, the important thing is to communicate with us!
Announcement to New-list List:
NEW: F-HYPDRR - Familial Hypophosphatemia, or Vitamin D Resistant Rickets
Many details of this congenital syndrome can be found at the web page at
http://georgia.ncl.ac.uk/VitaminD/vitaminD.html. This mailing list, open by moderated subscription, has been set up to provide mutual support to researchers, practitioners, patients and their families alike. Although this 'orphan disease' is relatively rare (estimates suggest perhaps 1 in 20,000), those of us interested in all aspects of the syndrome can benefit from world-wide exchange of information. Essentially, this syndrome is a rare genetic disease in which bones fail to develop properly even though sufficient Vitamin D is provided in the diet. Research has provided many useful clinical responses to this syndrome, and we hope this list will facilitate more questions and thereby, answers, as well.
To subscribe, in the BODY of mail addressed to: listserv@maelstrom.stjohns.edu
send the following command
SUB F-HYPDRR yourfirstname yourlastname
For example:
SUB F-HYPDRR John Smith
Owner: Larry Winger <Larry.Winger@ncl.ac.uk>
Owner: Elaine Jacobson <emj@super.org>
Owner: Joan Reed <jkrrkr@twcny.rr.com>
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