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Rare Disease Day 
To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). NORD is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments. The 1st Rare Disease Day was organized in Europe last year by EURORDIS, the European Rare Disease Organization. It was very successful, with many political leaders and members of royal families helping to draw attention to the activities. This year is the first time for Rare Disease Day to be observed in the U.S. The hope is that this will become an annual global event on the last day of February. There are many things you can do to participate in this worldwide awareness push - such as writing your Governor and state and local representatives and urging them to support our efforts by officially proclaiming the last day of February as Rare Diseases Day. For more information Click Here to visit the NORD Rare Disease Day website. Last modified Jun 17, 2009 XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, and low blood phosphorus levels.
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