Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of Rheumatologists panel which is currently reviewing and updating the Guidelines for the treatment of ANCA Associated Vasculitis. VUK also play an active role in the UK Vasculitis Rare Disease Working Group
In terms of current research funding, VUK are supporting trials at Addenbrookes Hospital, Cambridge of a new drug for the treatment of vasculitis, Alemtuzumab as well as a project at Birmingham Wellcome Trust Clinical Research Facility into the effect of controlling cytomegalovirus in patients with vasculitis.
We are offering practical support for a research study into fatigue in vasculitis patients at Birmingham. Also a study at University College Hospital, London into use of high resolution MRI scans for vasculitis patients with subglottal stenosis (damage to the windpipe) and a further two new studies/research projects just about to start in the next couple of months.
This is all in addition to our core activity, which is offering information, advice and support to patients who are newly diagnosed with vasculitis as well as those who are living with vasculitis.