Wednesday, December 14, 2016

Milestones on the way to our twentieth anniversary

In light of our anniversary, we're sharing a few milestones to indicate just how far the XLH community (including those with other related phosphate wasting disorders) has come in those twenty years.

The Network was founded in 1996. That was four years before the discovery of FGF23 (the hormone that triggers phosphate wasting)!

Beginning in 2001, the Network has represented the XLH community at the annual conference of the American Society for Bone and Miner Research (ASBMR). You can see a poster the Network presented in 2003, explaining the importance of patient organizations, at our official facebook page,

A membership survey in 2004 revealed that the listserv was reaching approximately 350 email addresses, which, when accounting for the number of affected family members, represented close to 900 people with XLH. We currently reach somewhere in the vicinity of three to four times that many email addresses.

The first XLH Day was held in 2011 in the U.S. and in 2012 in England. Since then, there have been events in Connecticut, Indiana, California and Texas. It's coming back to the east coast for 2017, with details to follow in the new year. We're looking into options for holding many more events, all around the world.

A Clinician's Guide to XLH was published in 2011, and has undoubtedly been of assistance to clinicians and patients alike. If you haven't already read it, you can find it here for free:

In 2015, the Network hired an administrative assistant, our first ever paid staff member. We're currently working on the search for our next paid staff member, an executive director, to start work in 2017.

Finally, the Network's corporate mission statement includes "foster[ing] the search for a cure." At the time the Network was incorporated, that seemed like something of a pipe dream, but now it's much more feasible. While a true "cure" is not yet on the horizon, a promising new treatment, KRN23, is on track for its developer, Ultragenyx Pharmaceutical, to apply for FDA approval in the U.S. in mid-2017, and comparable approval in Europe even sooner. We'll bring you updates as they're available.

We hope you're as excited about the next twenty years with the Network as we are. If you'd like to make a donation to help keep us going, you can do that here:

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