Thursday, April 7, 2016

ENDO Society conference highlights

Thousands of health care professionals with a particular interest in endocrinology (the hormone system) converged on Boston this past weekend to teach and learn and the annual conference of the Endocrine Society. Three members of the XLH Network's board were there: President Bill Coogan, Treasurer Geoff Edelson and Social Media Coordinator Gin Jones.

There was far too much going on, even in our little corner of the event, to share everything, but here are a few of the highlights:

The conference is global in nature, with attendees from all over the world. We were honored to meet with visitors from Brazil, Denmark, Austria, Germany, Argentina, Romania and Japan! We're adding doctors from several of those countries to our database of clinicians with XLH experience.  

We networked with two other patient support groups, the Osteogenesis Imperfecta Foundation ( and Soft Bones: The Hypophosphatasia Foundation ( with respect to the challenges we all share with respect to patient advocacy.

As always, our goal was to educate clinicians about XLH and the Network. We were particularly struck by the number of doctors who would tell us, "Oh, we don't need your information. We only treat adults." Then the two of us who are adults with XLH would jump up and down, shouting "No! XLH: it's not just for kids!" (We didn't really shout, but we were emphatic.) We still have a lot of work to do to bust the myth that XLH is only a pediatric disorder.

And finally, SAB member Thomas Carpenter, M.D., did a presentation on data from the KRN23 trials, which our president Bill Coogan attended. Bill reports that the presentation was well attended and well received.

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