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XLH Day Combines Yale Experts, Community Building, Advocacy, Education, Support and Fun
Mark your calendars for Saturday, September 8, from 9:30AM to 9:00PM, as researchers, clinicians, friends, family, and supporters will be gathering for the a full day of activities at the XLH Day 2012 in Hopewell Junction, NY. X-linked Hypophosphatemia (XLH) is the most common form of inherited rickets. For details on location visit WWW.XLHDAY.COM
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Holding an event like this has been a topic of discussion for years amongst the XLH internet community. Last year the right people to come together at the right time to bring it to fruition and the first XLH DAY was a success. Marina Velazquez of New Providence, NJ became involved when she went to the Yale Center for XLH looking for treatment for her and her two affected daughters. There she met a network of dedicated people who had a common vision to make a difference in the XLH community. According to Marina, this event last year was very emotional as it connected people with this disease, many whom have never met another person with XLH face-to-face. Over 100 people from all over US and some from Canada attended last year. Many more are expected in 2012.
Subsidized by businesses and organizations in the Greater Dutchess County of NY, and Fairfield, Litchfield and New Haven Counties of CT, as well as sponsorship of XLH Network Inc. and private donations, this event will feature presentations by expert clinicians, researchers, and support-related experts, many from Yale University, on XLH and related issues. Live entertainment and a host of children and adult activities will round out the day of introduction and sharing for this national event.
XLH is the most common form of inherited phosphate-wasting disorders characterized by rickets and soft bones. The clinical symptoms and manifestations of XLH are diverse and vary in severity, but generally include childhood leg bowing, lower leg rotation/torsion, and short stature. Patients with XLH are prone to dental abscesses and corrective surgery for leg bowing or tibial torsion if medical therapy isn’t effective. Adulthood presents patients with additional debilitating and often painful challenges affecting the bones, joints, tendons, and ligaments. XLH is considered a rare disorder, affecting about one person in 20,000. Since it is an X-linked disease, a father with XLH will pass it to his daughters, but none of his sons, whereas every child of an affected mother has a 50-50 chance of inheriting XLH, depending on which X chromosome is passed on. If the syndrome is present, regardless of whether it is a spontaneous case or inherited from an individual's parents, that individual will have the same likelihood of passing on the condition to their children.
For more information on XLH vist WWW.XLHNETWORK.ORG or to register to attend, visit www.xlhday.com
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Holding an event like this has been a topic of discussion for years amongst the XLH internet community. Last year the right people to come together at the right time to bring it to fruition and the first XLH DAY was a success. Marina Velazquez of New Providence, NJ became involved when she went to the Yale Center for XLH looking for treatment for her and her two affected daughters. There she met a network of dedicated people who had a common vision to make a difference in the XLH community. According to Marina, this event last year was very emotional as it connected people with this disease, many whom have never met another person with XLH face-to-face. Over 100 people from all over US and some from Canada attended last year. Many more are expected in 2012.
Subsidized by businesses and organizations in the Greater Dutchess County of NY, and Fairfield, Litchfield and New Haven Counties of CT, as well as sponsorship of XLH Network Inc. and private donations, this event will feature presentations by expert clinicians, researchers, and support-related experts, many from Yale University, on XLH and related issues. Live entertainment and a host of children and adult activities will round out the day of introduction and sharing for this national event.
XLH is the most common form of inherited phosphate-wasting disorders characterized by rickets and soft bones. The clinical symptoms and manifestations of XLH are diverse and vary in severity, but generally include childhood leg bowing, lower leg rotation/torsion, and short stature. Patients with XLH are prone to dental abscesses and corrective surgery for leg bowing or tibial torsion if medical therapy isn’t effective. Adulthood presents patients with additional debilitating and often painful challenges affecting the bones, joints, tendons, and ligaments. XLH is considered a rare disorder, affecting about one person in 20,000. Since it is an X-linked disease, a father with XLH will pass it to his daughters, but none of his sons, whereas every child of an affected mother has a 50-50 chance of inheriting XLH, depending on which X chromosome is passed on. If the syndrome is present, regardless of whether it is a spontaneous case or inherited from an individual's parents, that individual will have the same likelihood of passing on the condition to their children.
For more information on XLH vist WWW.XLHNETWORK.ORG or to register to attend, visit www.xlhday.com
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