Tuesday, May 10, 2016

XLH around the world: more from the UK

If you know of XLH-related events happening around the world, please let us know by emailing: XLHstories at gmail dot com. 

Meanwhile, we've got some more news from our board member, Oliver Gardiner, and what's happening in the UK. 

Oliver represents the XLH community in the UK as part of the Steering Group for Rare Musculoskeletal Diseases driven by the James Lind Alliance.

The James Lind Alliance (JLA) is a non-profit established in 2004. It brings patients, cartakers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions,' about the effects of treatments that they agree are most important.

The aim is to help ensure that those who fund health research are aware of what matters to both patients and clinicians. The JLA method is designed to lead to changes in the way research funding is granted, with a view to raising awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them.

The Steering Group Committee are currently in the early stages of planning and Oliver’s presence ensures that the XLH UK community is represented. We’ll be hearing more from Oliver and how you can help the JLA very soon.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.