Congratulations MPN-Japan!

September 12, 2019, was the 7th Annual MPN Awareness Day, a day dedicated to raising awareness for myeloproliferative neoplasms. In honor MPN Awareness Day 2019, the MPN Advocates Network held a contest for MPN advocacy groups from all over the world.We wanted to know how they are reaching MPN patients, doctors or researchers in their country; how they're helping patients and improving the LIVES of those living with the chronic, rare blood cancers, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. MPN-AN is excited to announce that Kaori Tak with MPN-Japan is our winner and will receive a $1,000 gift to go towards the future of their organization!Kaori put a great deal of thought and hard work into establishing an awareness day for the country of Japan. An opportunity that includes both learning and networking for the Japanese MPN community! As well as, holding an event and creating an official logo (pictured above). ...
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DON’T FORGET – MPN Awareness Day Deadline

September 12, 2019, is the 7th Annual MPN Awareness Day, a day dedicated to raising awareness for myeloproliferative neoplasms. In honor of September 12, the MPN Advocates Network wants to hear from YOU: how you are reaching MPN patients, doctors or researchers in your country; how you are helping patients; how you are improving the LIVES of those living with the chronic, rare blood cancers, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Send the MPN Advocates Network a short video, pictures or a description of what you’re doing (up to 500 words) before August 31st. The MPN Advocates Network’s Steering Committee of global MPN advocates will select ONE project to win $1,000 that will be given to your organization (if you are an accredited charity in your country) OR an MPN researcher of your choosing. Send entries to mirjana.hema@gmail.com and post them on social media, don’t forget to tag the Global MPN Advocates Network’s Facebook page and use the hashtags #HomeGrownHope4MPN and #MPNAwarenessDay. Entries must be received...
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Patient Power Interviews Dr. Ruben Mesa about Fedratinib Approval

"BREAKING NEWS: The FDA has approved fedratinib as a new treatment option for myelofibrosis patients. Watch now as our Editorial and Community Director, Rebecca Seago-Coyle, sits down with Dr. Ruben Mesa, Director of Mays Cancer Center at UT Health San Antonio MD Anderson, to talk about what this approval means for myelofibrosis patients, how to know if fedratinib is right for you, possible side effects, and more!" ...
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Fedratinib Approved for Myelofibrosis

The approval of Inrebic (fedratinib) for myelofibrosis is the first FDA-approval of a new therapy for myeloproliferative neoplasms in nearly a decade. We at the MPN Research Foundation are thrilled to see more options for people living with myelofibrosis who have long suffered from few options for relief. We hope this approval ushers in a new era with many more new safe and effective options for people living with PV, ET and MF! INREBIC® (fedratinib) is indicated for the treatment of adult patients with intermediate-2 or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis (MF). The endpoints focused on spleen size reduction and symptom relief. It is an oral kinase inhibitor with activity against wild type and mutationally activated Janus Associated Kinase 2 (JAK2) and FMS-like tyrosine kinase 3 (FLT3). Abnormal activation of JAK2 is associated with myeloproliferative neoplasms, including myelofibrosis and polycythemia vera. According to Celgene, INREBIC does more to inhibit the JAK2-selective mutation than the other JAK family members JAK1,...
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MPN Awareness Day Deadline Approaching!

September 12, 2019, is the 7th Annual MPN Awareness Day, a day dedicated to raising awareness for myeloproliferative neoplasms. In honor of September 12, the MPN Advocates Network wants to hear from YOU: how you are reaching MPN patients, doctors or researchers in your country; how you are helping patients; how you are improving the LIVES of those living with the chronic, rare blood cancers, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Send the MPN Advocates Network a short video, pictures or a description of what you’re doing (up to 500 words) before August 31st. The MPN Advocates Network’s Steering Committee of global MPN advocates will select ONE project to win $1,000 that will be given to your organization (if you are an accredited charity in your country) OR an MPN researcher of your choosing. Send entries to mirjana.hema@gmail.com and post them on social media, don't forget to tag the Global MPN Advocates Network's Facebook page and use the hashtags #HomeGrownHope4MPN and #MPNAwarenessDay. Entries must be received...
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CPI-0610 Demonstrates Activity in MF Patients After Ruxolitinib Failure

Exciting drug development news for Myelofibrosis patients, aimed at people whose disease had progressed or did not see an adequate response while on Ruxolitinib. A researcher at Mt. Sinai in this video discusses observations from their clinical trial with the drug CPI-0610.  Investigators saw improvement in anemia as well as improvement in bone marrow in some patients followed under this clinical trial.  As these disorders are related to the bone marrow, this is an exciting development. We will share more news as it becomes available. You can find clinical trials for Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis on our website www.mpnrf.org/Clinical-Trials. https://www.youtube.com/watch?v=7GNhBDU75Ng ...
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EHA’s Policy and Regulatory Newsletter – Issue #4

Issue 4 - July 2019 HemAffairs holds your regular dose of policy, regulatory and pharma news with impact on hematology in Europe. We also keep you abreast of relevant publications and events to keep an eye on. Enjoy the read. We are always eager to grow the hematology savvy community and are very happy with you forwarding HemAffairs to individuals and organizations in your network with an interest in the news we share. They can subscribe to this newsletter and from then on be part of our mailing list, in full respect of data protection and privacy. All they need to do is email us at communication@ehaweb.org. EU elections and health policy 2019 will see significant changes within the European institutions. The first already took place in late May, as 50% of EU citizens – the highest turnout since 1994 – went to the ballot box to elect their Members of the European Parliament (MEPs)....
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MPN Awareness Day

September 12, 2019, is the 7th Annual MPN Awareness Day, a day dedicated to raising awareness for myeloproliferative neoplasms. In honor of September 12, the MPN Advocates Network wants to hear from YOU: how you are reaching MPN patients, doctors or researchers in your country; how you are helping patients; how you are improving the LIVES of those living with the chronic, rare blood cancers, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Send the MPN Advocates Network a short video, pictures or a description of what you’re doing (up to 500 words) before August 31st. The MPN Advocates Network’s Steering Committee of global MPN advocates will select ONE project to win $1,000 that will be given to your organization (if you are an accredited charity in your country) OR an MPN researcher of your choosing. Send entries to mirjana.hema@gmail.com and post them on social media, don't forget to tag the Global MPN Advocates Network's Facebook page and use the hashtags #HomeGrownHope4MPN and #MPNAwarenessDay. Entries must be received...
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95 Days Until Horizon’s 2019!

CLICK HERE TO REGISTER, TODAY! DATE: 25th to 27th October 2019LOCATION: LISBON, PORTUGAL The MPN Advocates Network’s Learn Share & Grow approach that can be achieved through collaboration is the cornerstone for the advancement of MPN knowledge for our members. The MPN Horizons conference is dedicated to the development of our members as patient advocates and deals with topics such as Psycho-Social issues, How MPN’s work on a Molecular level, how to be an effective Advocate, Pipeline for treatment and Living with an MPN. Dealing with these types of questions is the essence of Learn. Share & Grow and our conference offers the opportunity to support and facilitate the quality of education. This one of a kind conference also provides opportunities to be able to exchange ideas, interact & share best practice and provide a platform to start networking across borders, build alliances and so much more for you to bring back to your own organization. Important Notes Apply for your Schengen visa on time!Please also remember to...
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How does MDM2 inhibition work to treat MPNs?

How does MDM2 inhibition work to treat myeloproliferative neoplasms (MPNs)? What are the goals of this treatment approach? Renowned experts Dr. Srdan Verstovsek and Dr. Jason Gotlib discuss MDM2 inhibition as an avenue for the treatment of MPNs and share information on an upcoming MDM2 clinical trial for patients living with myelofibrosis (MF) and polycythemia vera (PV). Who is this therapy right for? Watch now to find out more about the trial, eligibility, potential side effects and more. This program is sponsored by Kartos Therapeutics, Inc. This organization has no editorial control. It is produced solely by Patient Power. ...
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