As you are aware, we are working to try to get NHS funding approval for belzutifan/welireg, and we need your help, please!
The NICE appraisal committee needs to know just what it is like to live with VHL and how it affects the wider support groups of family and friends.
As part of our submission, we have given them the link to our website where patient stories are posted:
The more stories they can read, the better it could be for the approval process. As we all know, VHL affects everyone differently, even within the same families, and we need to give the committee as many different versions as we possibly can!
Would you like to add your story to this page?
Would your family/friends like to add their stories of how VHL affects their lives too?
If you have already provided a story, is there more to add to bring it up to date?
If so, please email it (with a photograph if possible) to support@vhl-uk-ireland.org
Thank you so much for your help with this 💙💙💙
