Wednesday, January 24, 2018

Wanted: XLH-experienced clinicians

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 provider is the wrong one, so you have to start over. Or perhaps you stick with the doctor, only to find out months or years later that the advice being offered wasn't based on the most recent science, and your health declined as a result.

Wouldn't it be great if that didn't have to happen to others? If you have a good, XLH-experienced health care provider, you can help other XLHers avoid all that frustration, wasted time, and inadequate treatment by sending that health care provider's name and contact information (just city and state is enough if that's all you have at hand) to us at

The Network is hard at work making sure you'll have all the information and resources you'll need when, assuming all goes as well as we hope, the new treatment for XLH is available in a few months. One of the first questions that many patients will be asking is "where can I find a doctor who knows about burosumab?"

We already have a database of clinicians who have experience treating XLH, but it's got some pretty huge gaps in it. That's where you come in. You can help to fill in the gaps and save some fellow XLHers from the frustrating, time-wasting, health-endangering experience of dealing with a health care provider who's never heard of XLH before. Just send your doctor's name and contact info to

Thank you for your help!

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.