Thursday, April 18, 2013

2013 Rare Disease Day Symposium

In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute.    This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones".   

Among the many esteemed presenters was our very own Scientific Advisor board member Dr. Thomas Carpenter presenting on "X-linked hypophosphatemia 2013: a clinical update of the prototype renal phosphate wasting disorder".   

Also attending and representing the XLH Network were Becky Mock, our new president, and board member Kathy Buchanan.  Becky participated in a panel discussion along with seven other heads of rare disease organizations.

The most exciting news is many of the presentations, including the panel discussion, were videotaped and are available online at the following link.  (Look for the play button on the presenters picture).
http://www.sanfordburnham.org/research/childrenshealth/genetic/symposium/Pages/2013.aspx

Talks relating to XLH are:
Dr. Thomas Carpenter M.D. - "X-linked hypophosphatemia 2013: a clinical update of the prototype renal phosphate wasting disorder"
Kenneth White, Ph.D. - "FGF23: a common denominator in metabolic bone diseases"
Panel Discussion - hosted by Charlene Waldman
The other talks may be of interest and worth viewing as many of the other rare diseases share similarities with XLH.