Open by moderated subscription, this mailing list is part of the extensive set of public service and family support lists maintained by Bob Zenhausern at St. John's University, Jamaica, New York.
Typically, we find that a direct query to either list co-owner is the most direct way of expediting subscriptions, but we'll be happy to respond to a more formal query sent through the St. John's University listserv.
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 extremely rare (estimates suggest 1-10 in a million live births), 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: Colin Steeksma <Colin_Steeksma@mindlink.bc.ca>
Owner: Elaine Jacobson <emj@super.org>
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