News
January 17th
The Spanish Association of Hypophosphatemic Rickets and Osteomalacia (AERHyO) has been busy in recent months, advocating for Spanish patients and their families, and we're happy to share their news with the rest of our global community.The group held a pr…
January 15th
Our next new board member is Susan Faitos. She has XLH and is a licensed Marriage and Family Therapist in California. 1. How did you get involved with the Network?Shortly after I got my first internet connection back in the 90s, I searched for anythi…
January 10th
Every year, Ultragenyx Pharmaceutical invites patients with certain rare diseases, including XLH and the related phosphate-wasting disorders, to their annual patient day in Novato, California, for food, games, refreshments and live music. This year's even…
January 8th
As previously announced, we have three new board members. Sara Show is here today to share a bit more about her involvement with the XLH (and related hyophophosphatemias) community. She's the mother of a spontaneous XLHer and is an attorney in South Dakot…
January 3rd
We're pleased to announce the addition of three new directors to The XLH Network, Inc., effective January 1, 2018.The three new members are Susan Faitos, Sara Show and Kimberly Murray. We'll post mini interviews of them here in the coming weeks, but for n…
December 27th
The latest data from 48 weeks into the adult Phase 3 trials are really encouraging. They show continuing improvement in terms of pain reduction, stiffness reduction and improved fracture healing. Perhaps most impressive was the drop in painkiller medicati…
December 20th
We wish you happy holidays and a healthy new year!You can see our holiday card at the official facebook page, https://www.facebook.com/xlhnetworkMeanwhile, the board is taking a brief break to get prepared for what we hope will be a life-changing yea…
December 19th
A company by the name of Magnolia Innovation is doing some market research relevant to the XLH community. They're offering a $125 payment for about an hour of time (beginning in January). Adult patients and the parents/guardians of minor patients are elig…
December 15th
Excellent news for the European members of our community!According to a press release today from Ultragenyx and Kyowa Hakko Kirin, "the Committee for Medicinal Products for Human Use (CHMP), the European Medicines Agency's (EMA) scientific committee, has …
December 13th
A group of patients in Spain have formed an organization called the Spanish Association for Hypophosphatemic Rickets and Osteomalacia (AERHyO), and are working hard on behalf of the approximately fifty known patients in Spain and the hundreds more that ar…

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© The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

Last modified Jan 4, 2018


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