Run for Rare Disease 

The XLH Network, Inc. announced today that it will conduct its first annual community walk/5k run on October 8, 2017 at the Farmington Canal Trail.  The event is being held in conjunction with XLH Day, an educational event that brings together those affected from across the country to learn about treatment developments and connect with others affected.

XLH (x-linked hypophosphatemia) is a rare disease that affects about 20,000 nationwide.  XLH is a chronic, progressive disorder with no cure and no treatment that directly addresses the underlying cause of the disease.  Those affected with XLH report lifelong complications, including:

  • Lower limb deformities (bow or knock-knee)
  • Waddling gait
  • Short stature or declining growth rate
  • Spontaneous tooth abscesses
  • Bone pain
  • Muscle pain and weakness

“Hosting this event in Hamden provides an opportunity for us to educate the public about XLH and to also bring awareness to the ground breaking research and treatment that takes place right here in the community,” said Carol LaFleur, Executive Director.  “XLH affects about 20,000 nationwide but in reality, 1 out of every 10 people is afflicted with a rare disease.  The chance to bring this event to the Hamden Community where such great work is being done to combat XLH and other rare diseases is something we are very excited about.”  Yale is home to the world renowned Yale Center for X Linked Hypophosphatemia.  Quinnipiac University’s Frank H. Netter School of Medicine is also conducting groundbreaking research into the treatment of XLH.

The event will feature a 5k run/walk and a kid’s fun run, entertainment, kid’s activities, raffles, refreshments and more.  The registration fee is $20 in advance or $25 the day of.  Registration is open at www.xlhnetwork.org.  Those wishing to volunteer can call 518-527-6236.

The XLH Network, Inc. is a 501c3 nonprofit organization whose mission is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.  For more information visit our website at www.xlhnetwork.org or call 518-527-6236.