Vasculitis UK News
Booklet Launch for Rare Disease Day 201928 Feb 2019
Rare Disease Day February 28th 2019 will see the launch of a new booklet - “Switching on the Light” which is Vasculitis UK’s contribution to Vasculitis Awareness Month in May.
This is a new booklet created by Kelly Jefferies and illustrated by Kelly and by Shanali Perera.
Having a rare disease can leave one feeling confused, bewildered, alone and isolated. The chance of meeting another person with your disease, with who, you can share knowledge and experiences, are very small. The Internet has become a way of communicating with other fellow suffers .. but you need to feel safe and secure to be able to talk to others...
For all these reasons, Vasculitis U.K. has for several years, had 2 online discussion groups - forums. One is are the Vasculitis face book groups and the other is on a platform called HealthUnlocked. All groups are closed groups, moderated by trustworthy and experienced members. Members are encouraged to have a pseudonym and to protect their privacy.
Recognising that these groups represent one of the greatest benefits offered by the charity, especially for those newly diagnosed, lost & bewildered by this mysterious disease. We put a call out to all members in the groups to tell us their opinions, good or bad. The response was overwhelming and confirmed our suspicions that so many found the online groups a lifeline.
The new booklet will be available in hard copy via the Vasculitis Shop at £2.50 a copy, but for £3.50 you can buy both of Kelly’s booklets. “Switching on the Light” and “Fact a Day About Vasculitis” - details on our Shop page