Tuesday, December 11, 2012

New NIH Research Study

NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated Hypophosphatemia
Principal Investigator: Dr. Rachel Gafni, MD
Sponsoring Institute: Craniofacial and Skeletal Diseases Branch, NIDCR, National Institutes of Health

The purpose of this study is to see how treatment with a drug called cinacalcet affects people with low blood phosphorus (hypophosphatemia) caused by hypophosphatemic rickets or tumor-induced osteomalacia.  Studies have suggested that cinacalcet may decrease phosphorus loss by the kidneys in these disorders.  If the cinacalcet works, the blood level of phosphorus may be higher.  This could result in patients needing less phosphorus medication.  It may also help the bones become stronger. 

This study will help us figure out the best dose of cinacalcet and how many times a day it should be taken.   Individuals who qualify for the study will take cinacalcet in addition to vitamin D and phosphorus.   All study visits will be at the NIH Clinical Center in Bethesda, Maryland.  There will be up to 3 inpatient visits and several outpatient clinic and lab visits. Once cinacalcet therapy is started, there will be 3 - 5 visits with a physician every 3 weeks over a 4- to 7-month period.  During the NIH visits, participants will undergo several assessments, which may include a dental evaluation, blood tests, urine tests, x-rays, and questionnaires.  Patients will be paid for participation in this study.  You may be eligible if you are between 18 and 70 years of age and have been diagnosed with low blood phosphorus.  For more information, please contact the NIH Patient Recruitment and Public Liaison hotline at 1-800-411-1222 or prpl@cc.nih.gov.

Thursday, October 18, 2012

SAB member wins award at ASBMR

Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research (ASBMR) conference.

Click here for the full article.

Saturday, August 18, 2012

XLH Day on CNN.com

See the XLH Day Press Release on CNN.com

Click here to read the article.

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.