Don't forget to join us for our May 1 webinar and question and answer session on Crysvita®. No preregistration required. Click on the link to join and please help spread the word!

 https://tinyurl.com/yco3pzd4

CrisvitaWebinar.jpg

 

Watch the replay on our YouTube Channel:

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
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…
March 7th
Have you ever had to try to explain to a physical therapist that there are some exercises you just can't do, no matter how hard you try, because your bones and muscles simply won't move that way?We've got some instructional videos from a physical therapis…
March 5th
The Hole in the Wall Gang camp in Ashford, Connecticut, in collaboration with the National Organization for Rare Disorders is holding a spring weekend for families dealing with rare disorders, May 31 to June 3. It's free, and the activities include fishin…
February 28th
Today is #RareDiseaseDay to raise awareness of rare disease.In state and national capitols all around the world, rare disease advocates are making an impact and putting a face to rare disease. In Washington, DC, there's a whole week of activities, as you …
February 26th
The European Medicines Agency has approved the use of burosumab in children (age 1 and up) and adolescents with XLH.There is, of course, more work to be done in individual European countries to ensure access and to educate both the patient and medical com…

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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 Jun 19, 2018


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