The VCRC is one of the main sources of hope for vasculitis patients. These are your white knights, out there in the laboratories, searching for ways to improve your condition, and ultimately a cure for vasculitis.
If you will take a few minutes to explore the opportunities, then if possible participate in one or more of the studies. Many are just questionaires you can fill in to give them more information. More data for a researcher gets them just that much closer to the cure. Read on... -- Joseph
Visit us at: www.RareDiseasesNetwork.org/vasculitis
Dear Joseph Carpenter,
Update from the VCRC
The Vasculitis Clini! cal Research Consortium (VCRC) is extremely pleased to report that our grant application for renewal of support for the Consortium was successfully refunded another five year period by the National Institutes of Health, specifically the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Office of Rare Diseases Research (ORDR).
This is obviously a major milestone for our group and the result of incredibly hard and high-quality work by all of us. Combined with funding for other studies, we will continue to have the resources to advance and successfully complete our ambitious and exciting research agenda.
VCRC contact registry study, coming soon!
We are making plans to expand the use of the contact registry to allow registered patients to directly take part in research in vasculitis via the internet. We are excited to announce our first planned research project will be the VCRC Study of Reproductive Health in Vasculitis. This study, which will include both women and men, is expected to start next spring. We are also developing a VCRC Pregnancy Registry that should be ready later in 2010.
Living with vasculitis, Lindsay's story
"Exhaustion, pain, and overall sense of illness...these are all words that come to mind as a patient with Takayasu's Arteritis. I have always been an athlete, playing both field hockey and softball in college. With each year of college, I progressively became more fatigued and found it more difficult to keep up with my teammates at practice. Shortly after graduating, I was diagnosed with Takayasu's Arteritis in 2003. Only months later my doctors would discover that my left subclavian artery was completely blocked and I would need bypass surgery. Being 22 at the time, I didn't know what to expect, TA is a rare auto-immune disease that has very little history of studies or explanations to why. Dr. Merkel and the VCRC have given me a positive outlook on living with a chronic, rare disease. Their personal approach and tremendous support has been a driving force for my mother's annual 'Walk This Way' Takayasu's Arteritis Fundraiser. Having Boston Medical Center's CEO, Elaine Ullian, personally thank my family for our efforts has proven their dedication to their patients. The VCRC has opened new doors to their TA patients, proving through their new and advanced studies that their end goal is ultimately the patient."
Learn more about the VCRC: www.RareDiseasesNetwork.org/
Learn more about our current trials: www.RareDiseasesNetwork.org/
We wish you all a healthy and happy New Year!
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