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
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 bursoumab, 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
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…
February 21st
You know that the new treatment for XLH, the antibody to FGF23, and known as burosumab, is under consideration by the U.S. Food & Drug Administration and by the European Medicines Agency with (we hope) approval due sometime in the next few months.You …
February 14th
How's your heart?While some early research (of limited value due to the tiny number of patients studied) suggested a possible correlation between XLH and heart disease, some very recent research suggests that FGF23, the hormone that XLHers have in excess,…
February 12th
Have you signed up to be a Rare Disease Day champion? There are lots of ways you can do that! Get all the details you need here! https://xlhnetwork.networkforgood.com/projects/45764-rare-disease-day-championsAnd while you're making plans, consider at…
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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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