V-pprn

[brew22]

I received this in my email. Does anyone know is this is a good group to join??
We are excited to announce the official launch of the Vasculitis Patient-Powered Research Network (http://r20.rs6.net/tn.jsp?f=0017LuLmv_Eeymiq8fEY2FA9zoTjMeF02wmglOqiO qFFJGR1_T6THL9rB1bs0KFeGGslMVyoNPT_eG7rQ__bH6zA--vEZ_0gEGc5bKKjXMGDbvrIG5BPpSnbuYdaMx-VWpziuBlHTToMTK-jM1-p-qbj81laecCMPR8cixtaO4mviGpJygNRH1K4vwO7V9QDoQrkJ1E LhEJKgN1WO6i58fHvBAOgbE_RieGuW0uwNfkEQUC0d32kE2_iu vHCJwGgoI1pS4API7gC0yQNHT3_p_qysxEwoL_sGjIPCsoJgGx 2G8=&c=8BaeTXkbLQG5eP87z9x17IZX9e1LMDAY94A-K4IbkjqQ6J2yK7apmg==&ch=63qYoZdbrSz7aXFSWkRpw6YVSRraJ11ynrhw4sZgq1lFK4j ROMU3xw==) (V-PPRN)! We encourage you to register today (http://r20.rs6.net/tn.jsp?f=0017LuLmv_Eeymiq8fEY2FA9zoTjMeF02wmglOqiO qFFJGR1_T6THL9rB1bs0KFeGGshoS2JVcrRgdkzkAK5MnJZ97V itwi0dck6UFX2APyXjZWdWIuHKnS2x81UacfR_TvWnr0jd6VeX _CZTAk7BTIv8h9F13TlLuyaJryhLWP0HeqQNEYivzkf_fILp53 zi6OvY5BmSs4IzR11dzXSed36eN67OMyNjLkxv1FMobhBUC_-HWvcOr_r5RfAPX6sVwcu7Q5PXStewGFyIcRrHzlH-MR75MZxMChAF9NnF-FRspYEuV_k0joqQ==&c=8BaeTXkbLQG5eP87z9x17IZX9e1LMDAY94A-K4IbkjqQ6J2yK7apmg==&ch=63qYoZdbrSz7aXFSWkRpw6YVSRraJ11ynrhw4sZgq1lFK4j ROMU3xw==)with the V-PPRN and become a vasculitis visionary in the fight to improve the lives of patients with vasculitis.

[Debbie C]

??? Never heard of it

[Pete]

This is the Vasculitis Foundation's Patient Powered Research Network. It's legit.

[mrtmeo]

I got it in an email too, but assume it is for Drs.

[Pete]

Actually, it's for us.

[Debbie C]

Maybe we all should look into it ?????

[Pete]

My closer reading of the e-mail indicates that members will be asked to complete surveys about living with Vasculitis, medications, participation in clinical trials, etc. I'm going to sign up tomorrow.

[JeanMarie]

I've already filled out the questionnaires. Vpprn is going to be important for future research. It's is a combination of the Vasculitis Foundation and the Vasculitis Clinical Research Consortium. Please consider joining.

[Dirty Don]

I already joined, have filled out a few simple questionnaires...just a little time. It's interesting, maybe it's helping someone...the more the merrier, join up!

[brew22]

Thanks Pete I wondered who was sponsoring it!! Guess I may fill out the forms... we need better meds and more research....Susie

[mishb]

It doesn't let anyone outside of USA join :crying:

[pwc51]

Like Michelle, I am outside the US. I have been in touch with them and they may, in time, decide to expand outside the US, but not at present!

[renidrag]

They are reaching out to patients, to join in the study. Imagine that, actually listening to the people who suffer with this disease. It is a good thing and I will also join up.
Dale

[MikeG-2012]

I just went through all the forms, questions, etc., and it took me about 20 minutes. If you have dates of symptoms, diagnosis, etc. in your head before you start, q&a on the site is pretty simple and easy to fill out.

THANKS for starting this thread!!

[Pete]

Like Michelle, I am outside the US. I have been in touch with them and they may, in time, decide to expand outside the US, but not at present!

Hope they can expand to include weggies world wide soon.

[mrtmeo]

I joined the network

[blu4runner]

I joined as well actually made a post about the foundation prior to seeing this post. Worth taking the time to hopefully help in the research of these vasculitis diseases