Most of the contracts between pharma and patient organisations are difficult to understand and contain unreasonable clauses

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The contracts provided to patient advocates are often too long, difficult to understand for patient advocates, contain ambiguous clauses, contain terms that are in conflict with the very nature of patient advocacy, or even put the signing patient advocate at legal risk. That is what a survey run by the pan-European patient advocacy network Myeloma Patients Europe (MPE), and further supported by a network of 21 pan-European cancer patient advocacy organisations (WECAN) from other disease…

IMI’s ADAPT SMART Kick-Starts 2017 by putting stakeholders at the centre

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London, January 18, 2017.- ADAPT SMART’s General Assembly, held at the European Medicines Agency (EMA), agrees to focus its final year on incorporating stakeholder feedback into the development of Medicines Adaptive Pathways to Patients (MAPPs) tools and methodologies. Myeloma Patients Europe (MPE) was attending this meeting. With growing international interest and visibility in the final year of the consortium, ADAPT SMART members have agreed to redouble their efforts to collaborate with key stakeholder groups and…

Webinar on current myeloma diagnosis guidelines and techniques

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Myeloma Patients Europe will hold an online webinar to provide an updated about the current myeloma diagnosis guidelines as well as a review of the current diagnosis techniques. The talk will be given by Dr Guy Pratt, Honorary Consultant Haematologist at the Heart of England NHS Foundation Trust and Senior Lecturer in Haematology in the Institute of Immunology and Immunotherapy, University of Birmingham.

MPE encourages EMA to review its negative recommendation for ixazomib

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Myeloma Patients Europe (MPE), in close collaboration with Myeloma UK, and along with almost 30 member and non-member associations across Europe, has submitted a letter to the Committee for Human Medicinal Products (CHMP) within the European Medicines Agency (EMA) to encourage them to reconsider the negative recommendation for ixazomib, and provide information to the appeal of their decision on ixazomib.

MPE becomes a member of the Patients’ and Consumers’ Working Party

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MPE is very proud to have been accepted as member of the Patients’ and Consumers’ Working Party (PCWP) at the European Medicines Agency for the term 2016-2019. The PCWP provides a platform for exchange of information and discussion of issues of common interest between the EMA and patients and consumers. It was established in 2006, and has enabled the Agency to build upon its existing interactions with patients and consumers. It provides recommendations to the…

Statement from MPE on the court case it has taken against its former treasurer Ms Begoña Barragán

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STATEMENT FROM MYELOMA PATIENTS EUROPE on the court case it has taken against its former treasurer Ms Begoña Barragán Brussels, Belgium – Friday May 20th 2016 Myeloma Patients Europe (MPE) believes it has been defrauded by its former Treasurer Ms Begoña Barragán who, between 2013 and 2014, carried out four unauthorised transfers of money from MPE’s bank account to the Spanish organisations AEAL and Fundaseth, which were under her control and responsibility. In total Ms…