www.xlhday.org
Watch the replay of the Crysvita® webinar and question and answer session.
https://www.youtube.com/watch?v=97xjQVdWIv4
We are thrilled to announce that the U.S. Food and Drug Administration has approved burosumab, commerically known as Crysvita. This is a life-changing event for those with XLH . Please see video below for full statement.
Click HERE to read or download the Frequently Asked Questions regarding this important announcement.
News
July 30th
We are kicking off our 2nd annual Virtual Walk/Run for THE XLH NETWORK, INC as a way to countdown to Baltimore! Our virtual walk/run will take place from July 30–October 7th.Spread the word and raise awareness by creating a peer to peer page and encouragi…
July 4th
There are only a few days left to speak up about the benefits of burosumab before the regulatory agency makes its final decision, possibly denying this life-changing treatment to patients in the UK. To comment, you must register at NICE using this link.&n…
July 3rd
The Pre-Event survey for the Symposium will help us to have even a bigger impact on our audience members, which include the medical community, researchers and insurers. Make sure your voice is heard! It will only take a few minutes. Click here to start:ht…
June 27th
We are excited to announce that Rachael Jones, a fellow XLH Network member, has agreed to assume the position of Interim Executive Director of the XLH Network effective with the resignation of Carol Lafleur at the end of this month. Rachael brings a wealt…
June 18th
The regulating authority in England is set to decide, incorrectly we believe, that even though burosumab is safe and effective, it will not be made available to patients in the UK for financial reasons. There is a short window of opportunity (just until J…
June 18th
The Board of Directors wishes to inform our membership that Carol LaFleur will be resigning her position as Executive Director effective at the end of the month. It has been a pleasure to get to know Carol over the past fifteen months and we thank her for…
June 7th
An official message about XLH Day from the Founder and Chair of XLH Day 2018 Elizabeth Olear: This year we are combining XLH Day with a Symposium focused on the adult symptoms and complications of the disease for the FDA. In the coming days and …
March 23rd
The first Latin America summit for XLH was held in Buenos Aires on March 2 and 3. Representatives of The XLH Network, Inc. were in attendance, including Board Member Elizabeth Olear and former board member Marina Velazquez, who joined attendees from Brazi…
March 19th
Parenting adolescents or teens can be a roller-coaster for all of us. Parenting an adolescent with a chronic illness has its own set of challenges. Developmentally, your child’s job during this time is to develop their own identity and work toward indepen…
March 17th
The Network is sad to announce the passing of Dr. Mary Ruppe, who treated many children and adults with XLH. Please join us in offering condolences to her family, colleagues and patients.Dr. Ruppe was affiliated with the Houston Shriners Hospital for Chil…
© 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.
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