Wegener's Disease, also called Granulomatosis with Polyangiitis (GPA) is a form of vasculitis. I've written about Wegener's and the different forms of vasculitis previously. Vasculitis UK is the leading Vasculitis charity in the UK. They were established in 1992.
The aims of the UK Vasculitis Trust are:
- To support those suffering from vasculitis diseases and their families by providing information and advice.
- To inform and educate those with vasculitis about their illness so that they are empowered to take greater control of it.
- To work with other organisations and medical professionals to improve the recognition, diagnosis and treatment of vasculitis diseases.
- To raise awareness of vasculitis disease among medical professionals and the general population.
- To enable vasculitis sufferers to contact others with vasculitis.
- To encourage and support the formation and development of local vasculitis support groups.
- To support research into the causes and effects of vasculitis and into improvements in the diagnosis of vasculitis and into treatment of people suffering from different types of vasculitis.
Vasculitis UK produce a twice yearly newsletter, which is well worth subscribing to. It consists of medical and scientific articles, written in plain English, blended with personal stories, reports of events, diary of forthcoming events, activities of fundraisers more.
Vasculitis UK are very active fundraisers and do a lot to support people throughout the UK and beyond in their fundraising efforts. If you are organising an event they may be able to help with an information pack, posters, sponsorship forms, t-shirts, pens, stick-it notes, balloons and leaflets to help promote your event. Additionly, your endeavours could be advertised in their Newsletter/Journals, e-News, Facebook and Health Unlocked sites.
One of the best resources on their website is the Vasculitis Routemap. The Route Map is intended for use by everyone touched by all forms of vasculitis - Patient and their families, medical practitioners, and other health, social care and benefit agency professionals.
It explains the diagnosis, treatment, and prognosis of all of the different forms of vasculitis and even highlights many of the problems experienced by patients so that their healthcare professionals can understand what they are going through.
It aims to be a complete guide to vasculitis in just one document.