MPN EXTERNALLY-LED PATIENT FOCUSED DRUG DEVELOPMENT MEETING

[socrates_8]

Post by MPN-MATE Admin » Mon Sep 30, 2019 11:48 pm

Hi Everyone...

There are always new things happening in the world of MPN. One of which I discovered through my networking with the MPN Research Foundation (MPNRF), in the States. They are a rare institution that is continually looking for ways to better aid of those of us individuals afflicted or affected by someone who suffers from a Rare Blood Cancer disorder; patients, their families, friends and their carers...

In this latest effort, MPNRF brought together Twelve MPN Patients to discuss aspects of what it means to have an MPN, and to ask them what they might like to see happen within the space of future MPN Research, and why.

The first YouTube is quite a lengthy one that covers an introduction from Michelle Woehrle, Executive Director of the MPN Research Foundation, and she begins by explaining what this is really all about:

PS. The first 13:39 sec's of this YouTube is just about MPN Sponsors & Partners. Michelle's address begins at 13:40 sec's (just in the event that you might like to skip ahead)

mpn-mate.com/forum/viewtopi...

Best wishes

Steve

[Clarke7]

Yes Socrates this entire 6 hour webinar held in Hyastville Md was very well done. I was able to watch the entire conference. It is archived for those who would want to watch. Drug developers and reps from the FDA were in attendance. Thanks for the shout out 🙏🏻

[Hidden]

I've been finding this conference most interesting and informative. I haven't watched it all yet as it's so long, but I watch a little every day. Thanks for posting.

[socrates_8 in reply to Hidden]

Yes, it is really interesting to see and hear the thoughts of so many other MPNers... in my view...

Best wishes...

[Hidden]

Hi Steve

Thank you for your strong advocacy on behalf of all interested in MPN. I don't know how to write to you personally. Can you help guide me to a support group on the Sunshine Coast? I am having trouble finding one. Also I would like to make a small donation to an Australian MPN research group, have only found American sites. Guidance on a few suggestions would be appreciated. I love reading your post. Despite your own journey you keep us all positive.

AStaunton

[socrates_8]

Hey AStaunton...

Thanks so much for such glowing compliments...

I have sent you a Private Message (PM) but if you cannot find it... Just let me know and I will email you all the details that you are seeking...

You will also find it through our Australian MPN Website Patient's Forum – MATEs

mpn-mate.com/forum/viewforu...

WWW. MPN-MATE.COM

Best wishes & speak more soon...

Steve

(Sydney)