Showing posts with label PFDD. Show all posts
Showing posts with label PFDD. Show all posts

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

Wednesday, February 7, 2018

Save the date: XLH Day 2018!

This year's XLH Day on Columbus Day weekend (October 5-7) in the Baltimore/Washington, DC area is going to be bigger and better than ever!

We're adding a one-day pre-event called "Symposium on Hypophosphatemia: past, present and future," which will focus on the experiences and challenges for adults living with XLH and related hypophosphatemias, including the autosomal versions and Tumor Induced Osteomalacia. It's an opportunity to discuss these issues in a structured environment, with representatives of the medical community and the U.S. Food & Drug Administration in the audience. The event will be videotaped and transcribed for sharing with the FDA and the medical community (including your clinicians!).

To read more about events like this (which in government-speak are called externally-led Patient Focused Drug Development meetings, or PFDDs), check out this site (and don't be intimidated by all the jargon): https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm453856.htm

We'll have lots more information for you over the coming months, but for now, we're hoping you'll put the dates on your calendar and start making plans to attend. It's going to be fabulous, and we want you to be part of it.