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Other VF Chapters

I met John Evans (CNS) online today, and he has a website too. I had some thoughts before about not repeating too much information, but meeting John, and seeing his site gave me inspiration.

Basically, each separate effort is just another path to the same garden. The key will be to make sure that garden is not a walled-garden. It should be open to all who need to enter, while also promoting an atmosphere where people can get support and still maintain their security and privacy.

If we repeat some things, like links to other resources, it is not only okay, but good. The way I see it, we all share what we know and ultimately this collaboration will benefit all who deal with vasculitis. The notable exception might be the treatment information, which should flow out through the medical professionals at the vasculitis research centers.

In particular, I liked that John linked to other chapters. So I am going to also. it may be that you know a patient in another state, or it may be that you need to visit another state and will need resources when you get there. As part of the family, in the Vasculitis Foundation, you are not alone.

(As a one man wrecking crew, I will have to add these over time, so please be patient.)

Try checking the Vasculitis Foundation list of US Support Contacts to see their list of localized support resources. Some or all of them may end up on this list.

Other Vasculitis Support Organizations:

CSS Association
"The Churg Strauss Syndrome Association was founded in June, 2004 by two patients, Jane Dion (right) and Dr. Carol Kavanaugh (left). Its original purpose was to gain representation on the Vasculitis Clinical Research Consortium which had recently received more than six million dollars in funding for vasculitis research. Carol and I were invited to attend a meeting of the Rare Disease Clinical Research Network in Rockville, Md. where we were encouraged and supported in our efforts to set up this resource to maintain a presence within the rare disease patient advocacy community.

Because Churg Strauss Syndrome is so rare and because it manifests itself in many ways, diagnosis and treatment can be problematic and confusing. Many of us search the web for pertinent information on the disease and its treatment. This task can feel overwhelming to the newly diagnosed. In addition, there has not been much research on CSS and therefore it remains somewhat of a mystery. Because it affects everyone differently, treatment is not standard. The treatments themselves need to be understood as they can have adverse effects. Some of the articles are written in “ doctor speak” which is hard for the lay person to interpret. We intend for this web site to be a place where patients and their families can easily find the information and support they need to better understand CSS. We also hope that by banding together and establishing a strong presence we might stimulate and support research into our disease. "
http://www.cssassociation.org/

Stuart Strange Vasculitis Trust

"About the Stuart Strange Vasculitis Trust

The Stuart Strange Vasculitis Trust was established, by family and friends, in memory of Stuart Strange who had started raising money for research into Wegener's Granulomatosis.

However it very quickly became apparent that patients with associated vasculitic diseases needed support, and so as information was asked for, the Trust started discovering about these other diseases.

The membership of the Trust has grown considerably and now consists of a national network of support groups, helping the Trust to achieve its aims, offering support to sufferers, their families and friends both at home and abroad. "
http://www.vasculitis-uk.org.uk/

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