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 💙💙💙

It gives us visibility in Europe as the UK and Ireland support charity.

Eurordis’ s mission statement is We empower, partner, and advocate for people living with a rare disease in Europe. It has a thriving community of over 1000 patient organisations.

– Connect with other patients and families
– Patients, family and friends welcome
– Lunch and refreshments provided

Guest speakers included researchers, genetic counsellor
team, charity members and consultants:
10.00 – Registration – Tea & coffee
11.00 – Welcome from VHL UK/Ireland
11.30 – Dr Emma Woodward on Research
12.30 – Lunch
13.30 – Fiona Lalloo – Information on PGD
14.00 – Q&A with Kath Wallis/Fiona Lalloo
15.00 – Tea & coffee
16.00 – Session Closes
17.00 – Optional meal at The Rampart Lion

10.30 – Session opens – Registration – Tea & coffee provided
11.00 – Welcome
11.00 – Pre-implantation Genetic Diagnosis by Alison Lashwood, Clinical Lead PGD at Guy’s Hospital
11.45 – VHL & Research by Carl Spickett, part of Professor Eamonn Maher’s research team at Addenbrooke’s Hospital
12.30 – Lunch provided
1.30 – Update on VHL UK/Ireland from Graham Lovitt & Roxanne Bonin – Charity’s Co-Chairs
1.40 – Personal HLRCC experience and update on VHL Research from Dr. Tony Horton – Charity’s Scientific Adviser
2.00 – Q&A by Sally Watts, Lead Genetic Counsellor at Guy’s Hospital
3.00 – Session closes

Download Slides

A big thank you to the speakers, to Guy’s Hospital Staff and to Roxanne Bonin and all her family for the arrangements, and all the attendees for making a very enjoyable and informative day.