I’m really proud of the work a team of patients did (including me, but I couldn’t have done it alone, and it’s so much better with collaboration!), working with health care providers, Ultragenyx employees, and professional writers/artists to produce an abstract and poster that was presented at the recent conference of the American Society for Bone and Mineral Research (ASBMR) in California.
The end result was both informative and pretty! The poster is entitled “Patient-perspective: XLH requires whole-body, whole-life, whole-family care,” and the team consisted of me, Amber Hamilton (med student and patient), Susan Faitos (patient and Executive Director of The XLH Network, Inc.), Athina Kinsley (patient), Rupal Gupta (Global Medical Director at Ultragenyx), and E. Michael Lewiecki (clinician treating metabolic bone disorders), along with professional medical writers and graphic artists to turn our ideas and observations into coherent sentences laid out in an eye-catching format.
The poster builds on the work done by Elizabeth Olear, MS, MA (Yale School of Medicine), and Marian Hart, BSN, RN, CCRC (Indiana University School of Medicine), in defining XLH as affecting the “whole body, whole life, and whole family.”
You can see the poster (and share it with your clinicians, who are the intended audience) here. And I hope you’ll all continue our work by repeating our message to your clinicians (and anyone else you talk to about your health), that XLH is a whole-body, whole-life, whole-family disorder! It’s a lot like any form of marketing: the more often the intended audience (the medical community, in this case) hears it, the more likely the message will stick.
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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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