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 must have questions about what happens after the approval. We're working on some resources that will answer as many questions as possible about burosumab and how to discuss it with your doctor, your insurer and your pharmacist.
We've been wracking our brains to anticipate all your questions, starting with the belief that they're the same questions we have ourselves. But everyone's experience with XLH is different and everyone has different concerns, so we need your help to make sure we haven't missed any important topics.
So here's your chance to tell us what you've been wondering about for the future of XLH treatment. We won't be answering your questions right now (and we can't advise you on whether treatment is right for you or your family specifically), but we'll try our best to make sure that the materials we'll be publishing this spring will contain enough information to answer all your non-patient-specific questions.
You can send your questions privately to firstname.lastname@example.org, or post them in a comment at our official facebook page, https://www.facebook.com/xlhnetwork/