Monday, June 18, 2012

New Clinical Study at Yale

Yale is currently seeking participants for a new study researching the "Use of Nasal Calcitonin to Suppress FGF23 in X-linked Hypophosphatemia".   Please see the flyer below for details.

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Sunday, June 17, 2012

XLH Network members raise over $5,000

The Inmans, whose daughter has XLH, held a fundraiser this past Spring raising over $5000 for the XLH Network.   The fundraiser engaged local business owners, friends, and family and included raffle items, proceeds from dinner receipts, and sales of t-shirts designed by their daughter.   

In addition to raising money, the event raised awareness for XLH and showed that a small grass roots effort from dedicated people can have a huge impact.  

Below is a picture of Sandesr Inman presenting her t-shirt to Dr. Carpenter at the Yale Clinic for XLH.

Monday, June 4, 2012

XLH Day 2012

Save the Date: 9/8/2012

Please join us for XLH Day 2012
hosted by Greg & Arlene Iorizzo 
and their family & friends at Hopewell Junction NY,  USA

XLH Day 2012 will be similar in format to XLH 2011, featuring guest speakers by XLH experts representing the medical, research, and dental fields.

We look forward to this very exciting day.   More details will follow shortly.