Hello and thank you for visiting my XLH fundraising page! XLH (x linked hypophosphatemia) is a rare, chronic and progressive disorder that affects 1 in 20,000 people. There is currently no cure and no treatment; rather treatment focuses on managing complications of the illness as opposed to the underlying cause of the illness. Those living with XLH report lifelong complications, including:
The XLH Network, Inc. is a patient led organization that serves as a worldwide support network for those living with XLH, their family members, and the clinical professionals working in the field. It is the only organization focused solely on combatting XLH and its services include, among other things:
A peer to peer community that connects patients across the country and abroad, helping them to share experiences, information and support
Patient, professional and public education
A physician referral network
Up to date information on clinical trials and research
A quarterly newsletter that keeps patients and professionals up to date on treatment news
Fact sheets, publications and educational literature for patients, physicians and dentists
A speakers bureau consisting of patients, family members and clinical professionals
The fostering of research including the Natural History Study, an ongoing research project incorporating patient clinical data that will help future researchers study how the disease develops over a patient's lifetime.
My goal is to raise as much as I can to help The Network accomplish its mission. I hope you will join my efforts by making a donation and helping to spread the word!
Maddie has benefited so much from this network. Our family has used their handouts & data base to help her get to where she is today,"thriving with XLH.!" Help us celebrate her recent "normal" labs with a donation. Any amount, small or large, will be deeply appreciated!