Wednesday, July 4, 2018

Last chance to comment on UK decision about burosumab

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
The evaluation committee is interested in receiving comments on the following:

a)How do symptoms (both physical and psychological) and treatments (including any surgery) you or your child experienced in childhood affect you in adult life?
b) For children on standard treatment (phosphate and calcitriol), what are the side effects of taking current treatment (phosphate, calcitriol)? How is that a burden for the child and your family?
c) If you have a child who is 1-12 years old and on burosumab, please explain how this treatment is currently helping in the short-term and how you expect that it will help in the long-term.
d) If you have a child who is 13-17 years old and on burosumab, please explain how this treatment is currently helping in the short-term and how you expect that it will help in the long-term.
If you have any questions at all, please don't hesitate to get in touch. Comment below or email us at Oliver.gardiner@xlhnetwork.org

Tuesday, July 3, 2018

Survey on adults living with familial hypophosphatemia

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:

https://docs.google.com/forms/d/e/1FAIpQLSe-dwpdUVrZ7-GauuFK3xDBjIRYUPiYr1s4QJe1v-cyCOMzMQ/viewform