There are a number of Social Media groups and resources which are used and enjoyed by people with vasculitis and by their families, including some that are run by Vasculitis UK.
Vasculitis UK’s own Social Media Resources
- Vasculitis UK has its own community on the HealthUnlocked platform, which provides a closed group where members can set their own levels of security regarding who can and can’t view their posts. This is not a Facebook group: you can apply to join at: Vasculitis UK HealthUnlocked
- There are various online vasculitis Facebook discussion groups both from the UK and from the USA. If you are a member of Facebook and would like to talk to others via Facebook, this link will take you to the Vasculitis UK support group. This group has been recommended by many in the UK who have been diagnosed with vasculitis for peer to peer support.
Vasculitis UK has produced a new booklet, Switching On The Light, which describes the value to those suffering a rare disease of joining a social support network. Currently available only as a download, we are currently seeking a commercial sponsor to help finance an initial print run