Category: In the News

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. ...

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...

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...

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...

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...