An international group of XLH medical experts have been meeting annually since 2021 to discuss the current state of treatment and research. They recognize that the understanding of XLH is undergoing fairly rapid changes, and also that their colleagues have useful clinical experience to share where hard data is missing. Th group recently published an…
XLH BLOG
The horror of “Prior Authorization”
The U.S. Senate’s Special Committe on Aging is holding a hearing Thursday (October 26), and has invited public input. There’s still time (barely) to send your story about living with a rare and progressive disorder. Here’s the announcement of what they’re looking for: Have you or a loved one been affected by a rare, progressive,…
International XLH Awareness Day
Next Monday is International XLH Awareness Day, and I hope that sometime between now and then you’ll check out the excellent social media campaign that the International XLH Alliance is running. The theme is what it means to be part of a patient community, and the Alliance is sharing insights from patients/parents of the various…
ASBMR!
Another short post this week, because while I did finally finish the manuscript yesterday and sent it off to my beta reader, my brain is now mush. But I can’t miss the chance to let you know that the American Society for Bone & Mineral Research (ASBMR) — one of the two professional organizations that…
National history study data!
Another short entry this week (the editing gremlins haven’t totally won yet, but it’s close), this time about the natural history study happening in Europe. “The International XLH Registry: first interim analysis” just establishes baseline data about its almost-600 participants (half of what they hope to eventually include eventually), so there’s nothing terribly surprising (to…
Transition to adult treatment
Apologies for not posting last week (and a little late this week). I’m facing down a deadline for my day job (manuscript for a book that will release next summer), and it had to take priority. I’ve got another week to go before the manuscript is done, so this week’s entry will be brief, but,…
Hyperparathyroidism
Yeah, say that three times fast! (And wish me good luck with typing it a bazillion times in the following paragraphs.) So we all know that elevated parathyroid hormone (PTH) levels are common in the chronic hypophosphatemia community. They can be high even before starting treatment, although most often, the elevation appears to be triggered…
Good news, revisited
I hope you had a lovely, long Labor Day weekend (if you’re in the U.S., and if not, i hope you had a lovely regular weekend)! So in the hope of continuing the good vibes, how about a few tidbits of good news in the hypophosphatemia community today? First, I’m really impressed by how (relatively)…
Really good advocacy work
My natural inclination (reinforced by law school) is to look for problems in everything I read or observe. It’s a hard habit to break, but I try to remind myself to spend equal time supporting good work. So let me tell you about the Osteogenesis Imperfecta Foundation Europe (OIFE). Now, before you stop reading, yes,…
Recent journal articles
I’ve been thinking a lot lately about just how many medical-journal articles have been published in the last five years about XLH and/or the related chronic hypophosphatemias. Used to be, if someone needed an article about XLH, the only one I ever recommended was “The Clinician’s Guide to XLH.” (It’s still good as a basic…