Inrebic, a new inhibitor drug for PMF, was approved by the EMA

Inrebic (fedratinib), a new inhibitor drug, received a positive opinion for the treatment of primary myelofibrosis and of myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia by the European Medicines Agency’s (EMA) Human Medicines Committee (CHMP) at its December 2020 meeting. Please read more: https://www.ema.europa.eu/en/medicines/human/summaries-opinion/inrebic ...
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Call for abstracts to present at MPN Horizons January 2021!

MPN AN is inviting all the patient representatives to share their story during the next MPN Horizons, taking place January 24, 2021! If you have experience on generating real world evidence in your home country in order to work or advocate with an HTA, we invite you to present. You will be recorded ahead of time and then have a Q&A session during the event. This is a wonderful way to share with your community and also to highlight the important work you are doing! If you are interested in learning more send an email to info@mpn-advocates.net ...
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MPN is announcing three new Steering Committee members

This autumn MPN Advocates Network put out a call for nominations to serve on the Steering Committee for three available spots. We had a strategic goal of identifying people from areas of the world not already represented on the Steering Committee. Happily, our call was answered by 3 individuals who have ample experience in advocacy, rendering no need for a vote. We are therefore thrilled to welcome Lyat Granati from Max Foundation, Chile; Param Puthen who is a leader in several blood cancer groups in India as well as Trustee at Friends of Max; Ken Young of MPN Alliance Australia. You can read their CV and statements here. This was part of our move towards being more responsive to the membership as well as transparent into the process by which our leaders are selected. As more opportunities to get involved in MPNAN become available, be sure that we will let you know how to take part....
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Day One of MPN Horizons 2020 a success; Day Two coming in January!

Part One of MPN Horizons 2020 a success; Day two coming in January We were honored to have so many members attend our first virtual Horizons! The videos will be uploaded very soon. Thank you to our speakers Dr. Ruben Mesa, Prof Steffen Koschmieder & Prof Alessandro M. Vannucchi! As a reminder the second part of the program takes place January 24th. If you are already registered, we will forward information about the agenda and logistics once they are available. ...
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Registration and Call for Abstract for the 2020 MPN Horizon

Register for Session 1 of MPN Horizons today! Dear MPN Advocate Network Member Community, We hope you are doing well. We want you to save the date of November 29th 2020 for the first of two MPN Horizons sessions which will take place this winter. Due to the pandemic we are making these virtual events, and somewhat more abbreviated than in years past. Nevertheless we feel it is very important to connect you with information that you will find useful as your do your important work.     Call for abstracts! We encourage all of the organisations to apply to present. There are two criteria: How you have handled access to therapies in your country and How your organization survived and thrived during the global pandemic The opportunity to present is open to all Patient Advocacy Organizations who register. This is the ideal opportunity to illustrate the organisations' activities at a global level that gives the opportunity to share best practices with MPN advocates from all over the...
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MPN AN announces the retirement of Peter Loffelhardt and Robi Zelig

Today MPN Advocates Network, a global collective of patient advocate organizations that serve people living with Myeloproliferative Neoplasms announces the retirement from the Steering Committee of two of their esteemed members. Peter Loffelhardt is one of the founding visionaries of the MPN Advocates Network. Like many advocates, he is a patient himself, having been diagnosed with Polycythaemia Vera in 1994. It's hard to imagine now, but 25 years ago, reliable information about MPNs was very difficult to find, specialists were rare and newly-diagnosed patients had to cope with very little support. Peter believed that people in that situation deserved more, and set about establishing a support group for patients in his adopted home of Spain. As his work as a patient advocate progressed, he used the skills he had developed over a long and successful career in international business to build a broad network of contacts in the medical community and the pharmaceutical industry. Peter soon realized that advocates and patient communities...
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Save the Date November 29, 2020!

We are reaching out with some The MPN Advocates Network steering committee is excited to share with you a few new opportunities to engage in a stronger way with the Global Network of MPN patient advocacy organizations. First, we want you to save the date of November 29th, 2020 for the first of two MPN Horizons sessions. Due to the pandemic, we are making these virtual events, and somewhat more abbreviated than in years past. Nevertheless, we feel it is very important to connect you with information that you will find useful as you do your important work. Second, for the first time ever, MPNAN is asking you, the members, to nominate and vote on who you want to serve on the Steering Committee for MPNAN. We have up to 3 open seats available. As a reminder, the mission of MPNAN is to enhance the ability of patient advocacy organizations to improve patient care and quality of life globally for those...
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Article Published Offering Patient’s Perspective

Congratulations to two of  The MPN Advocates Network's steering committee members who have recently published an article outlining challenges facing MPN patients! Cheryl Petruk, Executive Director of the Canadian MPN Research Foundation and Jon Mathias of MPN Voice in the UK teamed up to author the article which is available online here and will be in print in an upcoming issue of Springer’s Advances in Therapy*. The article includes an overview of current guidelines for the treatment of MPNs but highlights the incongruity between the patient experience, including breadth and burden of symptoms, and the physician’s perceptions, treatment goals, and expectations. The authors also discuss the effect geographical location has on patients including psychosocial impacts and access to treatments and clinical trials. Finally, the authors posit that better availability of Real World Data (see my recent newsletter article here) such as that collected in myMPN will aid in improving disease management for many patients. According to Cheryl Petruk, the hope with this publication is to spread the word...
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Advice for MPN Patients from Dr. Claire Harrison

Dr. Claire Harrison, MD, FRCP, FRCPath, Professor at Guy’s and St. Thomas’ Hospital in London summarises relevant information for MPN patients regarding COVID-19, or Coronavirus. 1. Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood-thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone or no treatment at all only need to follow the government’s general advice and aren't considered high risk. 2. Patients over the age of 70 with an MPN, or any MPN patient with additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable and should follow the government’s guidelines for vulnerable individuals. 3. Patients under 70 years of age who are on medications to control their blood count or their MPN like Hydroxycarbamide, Interferon, Anagrelide, Busulfan, and combinations are in a group where the situation is unclear and there is no clear evidence that they are high risk. But they should at the very least follow the government’s general...
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COVID-19 FAQs with Dr. Robyn Scherber

While information is still coming in and what we all know continues to emerge about the Covid-19, or Coronavirus, situation, Dr. Robyn Scherber from the University of Texas-San Antonio Medical Center answers a few frequently asked questions she's received from patients in her practice. Am I most susceptible to coronavirus because I have an MPN? We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. The data to help answer the questions as to whether coronavirus is going to be a huge problem or more of a nuisance for most patients with MPN is just not there. Although most folks that have severe COVID19 virus injections have serious underlying comorbid health issues—even to us physicians they really haven’t been told the details what most of those are. Most cases that I have heard of suggesting that underlying lung or heart disease seems to be the most...
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