April 12, 2019 [...]
You may have seen articles recently (here and here are two examples) on the issue of patient advocacy organizations or physicians taking funds from the pharmaceutical industry. We at MPNRF have been thinking a lot about this for years. In 2011 we adopted and published a policy on how MPNRF would maintain independence and neutrality in light of accepting contributions from sources that include pharmaceutical and smaller biotech companies. These funds come in the form of support for: [...]
Dr. Angela Fleischman has been researching the familial prevalence of MPNs for nearly ten years. A faculty member at the University of California Irvine, she hopes to one day be able to study patients remotely to expand her research outside of the Southern California area and broaden the scope of the MPN patient family registry. Dr. Fleischman earned her Ph.D. and MD from Stanford University and knew early on her goals of the research. [...]
Over 50 MPN patient advocate groups from around the globe congregated in Prague, Czech Republic, this August. The purpose was to share best practices, learn about what is going on in MPN research and also what issues patients in their countries are grappling with. [...]
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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..