ABOUT XLH DAY
XLH Days, sponsored by The XLH Network Inc., are designed to fulfill our mission statement:
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.
XLH Days include both social and educational components. They offer opportunities to meet other XLH patients (some for the first time ever) and their families. They can then discuss the challenges of this rare disorder, learn how others cope, and develop new strategies for managing their own or their children's symptoms.
Those discussions are educational in their own right, but XLH Days also provide opportunities to hear from clinicians with significant experience treating XLH, as well as scientists who are doing the latest research on the condition and potential treatments.
XLH Days have been held on an annual basis since 2011 in the United States. We look forward to bringing them to different parts of the country and eventually to other countries as well. Two XLH Gatherings have taken place in the UK and another just took place in May 2018 in Australia. We are looking forward to hosting official XLH Day events in the UK and Australia and elsewhere around the world. We have just begun discussions for a possible World XLH Day in conjunction with XLH advocacy organizations in Europe, South America, and Australia hopefully in 2019.
2017: East Coast – Quinnipiac University, North Haven, Connecticut
2016: Texas – Houston, Texas
2015: West Coast –Novato, California
2014: MidWest – Indianapolis, Indiana
2013: East Coast – Quinnipiac University, North Haven, Connecticut
2012 and 2011: Hopewell Junction, New York
You can see more pictures from previous events at our official Facebook page: https://www.facebook.com/xlhnetwork/
Previous XLH days have included presentations from experts listed below:
Thomas O. Carpenter, MD
Member of the Network's Scientific Advisory Board and Professor of Pediatrics and Professor of Orthopaedics and Rehabilitation at the Yale School of Medicine.
Michael J. Econs, M.D.
Member of the Network's Scientific Advisory Board and Glenn W. Irwin, Jr. Professor of Endocrinology and Metabolism and Division Director: Endocrinology and Metabolism, Indiana University School of Medicine.
Karl L. Insogna MD
Professor of Medicine (Endocrinology); Director, Yale Bone Center, Yale School of Medicine.
Erik A. Imel, M.D.
Assistant Professor of Medicine and Pediatrics at the Indiana University School of Medicine.
Raghbir Kaur, DMD
Member of the Network's Scientific Advisory Board and Clinical Instructor in Pediatric Dentistry Mount Sinai Hospital.
Carolyn M. Macica, M.S., Ph.D.
Chair of the Network's Scientific Advisory Board and Assistant Professor at the Frank H. Netter School of Medicine at Quinnipiac University in the Department of Medicine.
Anthony Portale, M.D.
Pediatric nephrologist and Professor of Pediatrics at the University of California San Francisco.
Margaret Seton, MD
Assistant Professor of Medicine at Harvard Medical School and Director of Metabolic Bone Diseases in the Department of Rheumatology, Immunology & Allergy, Brigham & Women's Hospital.
Melinda S. Sharkey, MD
Assistant Professor of Orthopedic Surgery at the Yale School of Medicine.
Alison M. Skrinar, Ph.D.
Senior Director, Clinical Sciences at Ultragenyx Pharmaceutical, Inc.
Mary Ruppe, M.D. Director, Bone Disease Clinic Houston Methodist Hospital