Back in 2003, The XLH Network, Inc., made history by presenting a poster at the annual conference of the American Society for Bone and Mineral Research (ASBMR), entitled “Self-actualized Perceptions of X-Linked Hypophosphatemia Suggest a Pro-active role for Patient-Support Networks in Managing Patients with this Rare Metabolic Bone Disorder.” It was groundbreaking, since as far as I know, it was the first time a patient group had ever presented a poster at the conference. Since only ASBMR members can submit a poster, and only doctors can be a member of ASBMR, it was submitted thanks to patient and PhD Elaine Jacobsen, who qualified to join the society.
According to Larry Winger, “The major point of our presentation [was] that although in the past many people affected by XLH were unaware of just what having this metabolic disorder might mean to themselves and their families, today our information distribution network can enfranchise and empower people with the best information about XLH.”
Well, guess what? A group of patients has done it again! With financial assistance from Ultragenyx (they hired a professional medical writer to turn our words into language that would be music to the ears of clinicians), four patients, an Ultragenyx scientist, and a clinician who’s a member of ASBMR all collaborated to produce “Patient Perspective: XLH Requires Whole-body, Whole-life, Whole-family Care,” which has been accepted to this year’s ASBMR conference in San Diego, CA on October 1-4. The abstract we submitted will be turned into a poster, which will be displayed at the conference, and a time assigned for attendees to ask questions of a representative from our group.
The patients are Susan Faitos, Athina Kinsley, and Amber Hamilton, and myself. You probably all know Susan in her role as Executive Director of the XLH Network, Inc., and in case you don’t know her, she’s also an XLH patient and a licensed social worker. Athina is a long-time member of the Network and a committed patient advocate, who spoke at the Symposium on Hypophosphatemia (starting around the 27-minute mark). Amber is somewhat newer to the XLH community, but has already made a real impact in a short period of time. Unless the plans change due to her crazy busy schedule, she will be representing us at the conference, and she has the distinction of being not just a patient but also a med student!
The clinician on the team is E. Michael Lewiecki, MD of New Mexico, where he treats a variety of bone disorders, including XLH. I’m grateful to him for his insights about getting our voices heard by clinicians.
Also on the team, sharing her valuable scientific/educational expertise to back up our lived experiences, is Rupal Gupta, the Global Director of Medical Affairs at Ultragenyx.
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As always, the author is a well-read patient, not a doctor, even if she’s now officially an author of an ASBMR poster, and is not providing legal or medical advice.
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