In this set of pages, interested browsers can find anecdotal features of the growth and development of extended families, or individuals with Familial Hypophosphatemia. In particular, please note the anecdotes which individual members from both England and the USA have kindly prepared. A 'real' story is an incredibly useful way of representing some of the features of this syndrome. Because of these stories, many families have contacted us, here at the Vitamin D Metabolism and Rickets website.
We are a growing, world-wide network, now, emerging as a patient support organisation which we refer to as the XLH (X-Linked Hypophosphatemia) Network , with over 200 families represented on the F-HYPDRR mailing list, from countries as noted in the table below. We encourage you, if you are interested in Vitamin D Resistant Rickets, X-Linked Hypophosphatemia, or however you know this syndrome, from a clinical, research or family support perspective, to subscribe to this free support network, where questions that we all have to deal with are considered sensitively, and with as much care and support as we can provide.
We have produced a leaflet which describes both this emerging network, as well as providing answers to questions which newly diagnosed families may have. This leaflet, The XLH NETWORK FLYER, is easily accessible as an Acrobat readable file. Our members around the world are already engaged in distributing it at their local clinics. If you join us, we'd be delighted if you would also help to spread the word at your clinic, so that other families can join us and our support can be mutually rewarding!
To show how world-wide we are, I'm indicating places where either patients, researchers or clinicians are situated, in the tables below. Where in the world are you?
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|