This weekend is the annual meeting of the American Society for Bone and Mineral Research, which, as its name suggests, is the professional organization for researchers who study XLH and other bone disorders. The day before its official start, there’s usually a symposium on rare bone disorders, and this year is no different. There’s nothing specific to XLH, although there is one talk on Generalized Arterial Calcification in Infancy (which is a form of genetic hypophosphatemia caused by something other than FGF23). You can read the agenda here: https://www.asbmr.org/rare-bone-disease-symposium
Most of the information that will be presented at the meeting is embargoed (meaning it can’t be shared until after the meeting), but I hope to have some material I can share later on. For now, though, it’s just got me thinking (again) about the research we need in the XLH community, so I’m tossing the question out to you — what issues/questions do you have that you’d like to see some data on? Perhaps it’s a specific symptom and whether it’s related to XLH or not, or perhaps a symptom that you’d particularly like some relief from (and that’s not currently adequately controlled by existing treatment).
So drop me a note if there’s a question or issue you’d most like to see answers for, and I’ll share (anonymously) your thoughts later on.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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