News
April 23rd
Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine businessperson and a writer, with aspirations to become a novelist. When living with a chronic illness like XLH, w…
April 16th
A number of institutions are ramping up their efforts to establish patient registries to facilitate research, and today we're highlighting one such effort in the U.K., with a particular interest in XLH patients.The UK's National Institute for Health Resea…
April 9th
Joyce Inman is today's guest blogger. She's the secretary of the XLH Network, Inc., and the parent of a spontaneous XLHer who was diagnosed, as is typical, between her second and third birthdays. When our daughter was first diagnosed with a condition…
April 2nd
     This week, we're pleased to have Pol Harvengt here to share a little about his experiences as an XLH patient, a biologist and one of the founders of the patient-support group for French-speaking XLHers. You'll note too that he was one …
March 26th
Elevated parathyroid hormone (PTH) levels, or "hyperparathyroidism" is a common symptom for many XLH patients. A drug known as Cinacalcet, which is generally used for the hyperparathyroidism of chronic kidney disease patients, is sometimes prescribed to X…
March 24th
We can't all go to D.C. (or other governmental centers) and meet with our legislators, the way Becky and I did a few weeks back, but we can all make our voices heard.Congress is working now, through the end of the month, on the next year's budget for vari…
March 19th
This is the first in a series of interviews of the people who are working on behalf of the members of the XLH Network, Inc., either as officers/directors or as scientific advisors.Today, I'd like you to meet Oliver (Ollie) Gardiner. He is originally from …
March 12th
The last couple weeks, we've been focused on advocacy at the macro level, working with researchers and politicians. There's another kind of advocacy at the more micro level that we need to do. Rachael Jones (no relation to Gin Jones), herself an XLH patie…
March 5th
It's easy to think of politicians as ignorant or foolish or self-aggrandizing, and I'm about as cynical as anyone, so I was pleasantly surprised by the experience of visiting Capitol Hill to advocate for sustained funding for basic science research at Nat…
February 26th
The last day of February each year is World Rare Disease Day. This year, it falls on February 28th.Here in the U.S., several medical-professional and patient-support groups have gotten together to make the entire week into a time of awareness and advocacy…

 

XLH Day 2013

 

Videos and pictures are now available!

 

Go to www.xlhday.com

 

© 2011, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

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Last modified Apr 5, 2014


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