Rare Disease Day is February 28

Join us in spreading awareness of XLH.   Our toolkit features tips and tools for how you can take part and gives a step by step guide!  Download it today by clicking here!

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Become a Rare Disease Day Champion for XLH!  Click this link to start a fundraising campaign today!


 

News
February 21st
You know that the new treatment for XLH, the antibody to FGF23, and known as burosumab, is under consideration by the U.S. Food & Drug Administration and by the European Medicines Agency with (we hope) approval due sometime in the next few months.You …
February 14th
How's your heart?While some early research (of limited value due to the tiny number of patients studied) suggested a possible correlation between XLH and heart disease, some very recent research suggests that FGF23, the hormone that XLHers have in excess,…
February 12th
Have you signed up to be a Rare Disease Day champion? There are lots of ways you can do that! Get all the details you need here! https://xlhnetwork.networkforgood.com/projects/45764-rare-disease-day-championsAnd while you're making plans, consider at…
February 7th
This year's XLH Day on Columbus Day weekend (October 5-7) in the Baltimore/Washington, DC area is going to be bigger and better than ever!We're adding a one-day pre-event called "Symposium on Hypophosphatemia: past, present and future," which will focus o…
February 1st
We are officially kicking off our Rare Disease Day Campaign today!The theme of this year’s Rare Disease Day is "Research." We all know how important research is for the XLH community, and as we gear up for a potentially life-changing 2018, we hope you wil…
January 31st
Have you ever wanted to see the Board members in action? Perhaps say hello, ask us some questions, share some ideas, take a selfie with us?Here are just some of the places you can find us in 2018:February 27, 2018: North Haven, Connecticut    &n…
January 29th
How will you be participating in Rare Disease Day this year? It's just one month away, on February 28. You can help spread awareness of rare diseases generally and your own rare disease in particular by downloading our toolkit and becoming a Rare Disease …
January 24th
Do you remember how hard it was to find a doctor who knew something about XLH, either for yourself or your child? For many XLHers, it's a time-consuming and frustrating experience, waiting months for an appointment, only to find out that the health care p…
January 22nd
Our final new board member for 2018 is Kimberly Murray. She has XLH herself, as does her young daughter. 1. How did you get involved with the Network?The "right" answer should be that I became involved because I have XLH. But the "real" answer is tha…
January 17th
The Spanish Association of Hypophosphatemic Rickets and Osteomalacia (AERHyO) has been busy in recent months, advocating for Spanish patients and their families, and we're happy to share their news with the rest of our global community.The group held a pr…

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© 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 to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

Last modified Jan 25, 2018


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