MPN AN ANNOUNCES CHANGES IN GOVERNANCE
MPN Advocates Network, a global collective of patient advocate organizations that serve people living with Myeloproliferative Neoplasms, announces the election of a new Chair.
Michelle Woehrle stepped down to spend more time with her young children and family.
As a consequence, the Steering Committee has unanimously appointed Werner Zinkand as Chair of MPN AN. Secondly, the Board has also decided to appoint Mirjana Babanova as Treasurer of the MPN AN.
MPN Advocates Network wants to warmly thank Michelle for her great stewardship of the network. We feel very lucky to have benefitted from her direction and contribution to the MPN community. Michelle has done great work to make our community much stronger with a clearer path and line of sight for our patient advocacy groups. Under her leadership we have truly become a global network.
Werner Zinkand, a board member of the German MPN network, will bring his wealth of experience and will continue to lead the changes we are going through and...
Review of the MPN news from the ASH 2020 with Dr Claire Harrison
VIDEO is now available of our recent MPN webinar "Review of the MPN news from the American Society of Hematology (ASH) annual meeting" featuring Prof Dr Claire Harrison from Guy’s & St Thomas’ Hospital.
The webinar took place on 18 February 2021 and it is the first in a set of members-only meetings for MPN patient advocates to equip you with all the recent information you need to pass on to your respective organisation.
Many thanks also to our own Kapila Viges (MPNRF, United States) and Ken Young (MPN Alliance Australia) for co-moderating this informative session!...
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....