Thursday, January 19, 2017

What you can do

It's easy to fall into hopelessness and the feeling that there's nothing you can do to improve either your own XLH experience or anyone else's.

That's not true, though. There are several things you can do right now:

1. Keep yourself informed about the latest on XLH research and treatment options by joining, visiting and participating in our forum: Don't just lurk. Say something, share an experience, ask a question, answer someone else's question!

2. Participate in the various research opportunities that are pending:
A. Survey on hip/knee replacement:
B. Survey sponsored by NORD and Oregon State University on the informational and psychosocial support needs of people living with rare disorders:

3. Participate in information-gathering interviews, like the one sponsored by Ultragenyx Pharmaceutical on pediatric issues (or future interviews that will undoubtedly include older age groups). For more information, contact Holly.Spencer at

4. Educate yourself on important health issues. Global Genes is offering a webinar on February 1 about navigating the health insurance system. You can register here:

5. Plan to attend events where other XLH patients gather to share their experiences, like XLH Day to be held in Connecticut on October 6-7 (Columbus Day weekend). Volunteering at XLH Day would be a great way to help yourself and others too!

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