Wednesday, October 5, 2016

Celebrating the Twentieth Anniversary of the Network

This November will be the twentieth anniversary of the coming-together of XLH patients to form the Network. What an amazing two decades for a grassroots organization of rare disease patients. It's likely that none of those original founders could have imagined where we'd be today, with so many members, so much improved knowledge about the underlying metabolic cause of the condition, and so much hope with the possibility of a breakthrough therapy on the horizon.

So far in 2016, we've been working hard to ensure that the next TWENTY years will bring even more accomplishments for our community. We've already represented families with XLH at three major medical conferences. We've hosted the Texas XLH Day and had the opportunity to meet families who are part of our network, as well as doctors and researchers who are working to support our community. We are also closely monitoring the progress of the clinical trials for KRN23, a new and potentially life-changing treatment for patients with XLH.

And that's not all. You'll be hearing about some other work in the next month, as the behind-the-scenes projects come to fruition. In particular, we're on the verge of launching the XLH Natural History Study and Patient Registry—a platform that will, for the first time ever, allow us to collect the data necessary to further the research into XLH and related conditions.

We hope you'll support that ongoing work and join in the celebration of the past TWENTY years of community and advocacy. For every donation of at least TWENTY dollars made to The XLH Network, Inc. from October to December, donors will receive one of our new XLH Network car stickers. (They're about 3" x 5", and you can see a picture at our official facebook page, )

We hope you will enjoy this small recognition of your contributions to the Network and the work that we do. And, of course, we hope that people will see your sticker on your car or laptop case and ask you about The XLH Network, Inc. When they do, be sure to take a moment to educate them!

Go to to donate and get your XLH Network sticker today!

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