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Vasculitis Patient-Powered Research Network
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V-PPRN Patient-powered clinical vasculitis research.
V-PPRN Patient-powered clinical vasculitis research.

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Vasculitis Patient-Powered Research Network's posts

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New tool allows access to paywalled research papers for free! http://unpaywall.org/

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Invisible illness awareness day panel debunks ailment stereotypes http://ow.ly/6hoM30az6cP

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Blindsided by kidney failure? @PCORI-funded study of way to support kidney patients in treatment decisions. http://bit.ly/2mKmvfE

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We appreciate that the American Health Care Act (AHCA) maintains important patient protections, such as guaranteeing coverage for those with pre-existing conditions, caps on out-of-pocket costs, and the elimination of annual and lifetime benefit caps. We also appreciate the AHCA’s efforts to stabilize the market through additional funding for plans with higher-cost enrollees. However, those who are financially disadvantaged could be unable to manage their chronic disease or disability without appropriate resources and subsidies. For more, visit http://www.nationalhealthcouncil.org/healthreform

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How do advisory panels contribute to PCORI's research agenda? Hear from a panelist on his experience in a new blog:
http://ow.ly/jpVz30arEjk

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The only way to improve disease understanding and conduct research that will improve the quality of life for patients is to collect data (disease information) from patients living with vasculitis. Patients’ disease experience is the key to unlocking the answers to the questions that are most important to patients and physicians. Share your data and improve disease understanding today! www.vpprn.org
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Tomorrow is the CNS vasculitis webinar at 12:00 PM (EST). Register: http://ow.ly/xFTy301H41E

Can't attend? Submit your questions and we'll ask them for you! The recording of the webinar will be available on the Vasculitis Foundation website at http://ow.ly/GNBM301H4dZ

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How does vasculitis impact your pregnancy? And how does being pregnant impact vasculitis? We want to help answer these important questions! If you, or someone you know is pregnant with vasculitis, please consider joining the Vasculitis Pregnancy Registry. http://www.vpprn.org/VPREG
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