Follow the link to connect to our Official Facebook page (you can also find it within the footer of each page on our website) Click here
- The page is open to everyone. Just follow us to get up-to-date information and share with your networks
We also have a private Facebook Group, which is only for VHL patients and their loved-ones/ carers Click here
- Feel free to share your thoughts with others who are in the same position, swap stories and seek answers to common questions
- To join just find the “More” button and click the link to the group
And for those patients who have undergone a “Whipple” procedure, you may also wish to join UK WHIPPLE WARRIORS | Facebook
- This group is a private group for people who have had the “Whipple” procedure and their carers, to share their experiences and to help each other, whether you are in the UK or any other country but have relatives or friends in the UK.
- Despite the name the group also welcomes people who have had distal pancreatic surgery or total pancreatectomy
And finally, the VHL Family Alliance Group in INSPIRE supports VHL, with discussion topics within the VHL Community INSPIRE Forum
- The group provides private patient-to-patient message board support, allowing patients to talk with each other and exchange questions and concerns, while providing emotional support to one another.
- You can also write your own journal entries or start, or just add to, discussion threads.
