Block A, Centre House
Tuesday 15th May 2012
Patients suffering from rare auto-immune diseases are getting advice on where to turn for support thanks to a charity.
The Route Map For Vasculitis has been launched by Vasculitis UK to help patients, families and healthcare professionals deal with the rare diseases.
The 112-page guide contains information on each type of vasculitis, treatments, tips on living with the condition, how to support children and young adults affected, and how to navigate Government benefits.
It has been developed by the patient-led charity with advice and support from doctors in the Department of Renal Immunobiology at the University of Birmingham.
The project has been funded by the Department of Health and the Genetic Alliance has supported Vasculitis UK and nine other charities to produce disease-specific route maps.
Vasculitides, a group of rare auto-immune diseases, affect only 15 in every one million people, which means patients may struggle to find information and support.
Vasculitis UK chairman, John Mills, has Wegener's granulomatosis, a disease which leads to blood vessels becoming inflamed, making it hard for blood to flow.
He said: "All of us affected by a vasculitic disease have, at some time, felt overwhelmed and not known where to turn to for advice. The Route Map is an all-in-one guide for patients, their families and the healthcare professionals that care for them day-to-day, many of whom may never have come across a patient with vasculitis before."
Professor Lorraine Harper, professor of nephrology and the medical adviser to Vasculitis UK, said: "The diseases we call vasculitis are rare but have a big impact on the people they affect. We hope the Route Map will become a reference source for people affected by any kind of vasculitis and the GPs who care for them."
To download the route map visit http://www.vasculitis-uk.org.uk.
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