The MPN Research Foundation in Prague.
Once a year, for the last three years, a growing number of MPN patient advocacy groups from across the globe, have been meeting to learn more about new treatments being developed for patients and how best to engage the patient community. The MPN Advocates Network, who organizes the annual conference, was founded in 2013 with the goal of creating a global network of MPN patient groups.
This year’s meeting took place from Friday, August 31 to Sunday, September 2nd and was held in Prague, Czech Republic. Over 55 representatives from over 30 organizations attended.
The conference included topics of importance to the MPN patient community. The program featured medical specialist and advocacy leaders from around the world. From a presentation about Wait and Watch to a panel discussion about clinical trials, those attending improved their capacity to meet the needs of their constituents and optimize their advocacy activities.
Delegates attending the conferences were given an opportunity to share best practices. At the beginning of the conference, presentations were made that described key initiatives that they implemented so other could learn from and perhaps implement as well. Activities were shared that were successful and that didn’t quite work the way they were designed. Ideas were discussed on how to make the projects more successful in the future. This gave delegates the opportunity to learn from advocacy initiatives and experiences of other MPN organizations.
Videos and slides from the 2018 conference will be available soon. To give you a taste of what was presented, here is a link to the slides and videos from the 2017 conference.
The MPN Advocates Network is always welcoming new member groups. If you want information about a group near you or how to start your own group, go to www.mpn-advocates.net to send an email to firstname.lastname@example.org