EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE 
EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE
As part of the Advocate Development Programme (ADP), MPE is organising an online webinar about science in patient advocacy. Although the webinars held within the ADP are usually open only to our ADP trainees, on this occasion we would like to invite to the webinar all our members and patient advocates interested in science. The webinar “Science in patient advocacy” will be given by Bettina Ryll, chair of the ESMO Patient Advocates Working Group (PAWG)…
Lugano/Brussels, 3 August 2017. Three leading European organisations in the fight against cancer have called the European Union (EU) to urgently increase its support for independent academic research for the benefit of cancer patients, in an article published (today) in ESMO Open. “Independent academic research is endangered for lack of funds and adequate legislation,” said Rolf A. Stahel, ESMO Past President and co-founder of the CAREFOR platform. “Working closely with EU institutions, we can make sure…
It is with great sadness that we share with you that our friend and colleague, Jelle Palsma passed away. Jelle was part of the board of MPE’s French member, Association Française des Malades du Myélome Multiple (AF3M), and was a very active representative at MPE. Despite his health condition, Jelle was involved in highly relevant MPE initiatives with a remarkable positive attitude.
We all were saddened to hear of our recent loss of Yacob Yacobovitch, who passed away on the 18th of april 2017. Yacob Yacobovitch was member of Myeloma Patients Europe from 2012 until 2016.
The MPE Advocate Development Programme (ADP) is a training programme directed to MPE members with the aim to provide them with the skills and knowledge that any myeloma patient advocate should have regarding the drug development process. The main goal of MPE is to put medicines research into a myeloma context and create a tailored training programme for the myeloma community.
It is with great sadness that we share with you that our friend, colleague and Board member Mika Peltovaara (23 Dec 1965 – 21 Febr 2017) passed away in the morning of the 21th of February 2017. Mika was board member of Myeloma Patients Europe since 2014. He was a very experienced, long-serving patient advocate for the Finnish Cancer Patient Association, with a special interest in possibilities of social media and new technologies in connecting…
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…
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…
Based on the findings of the European Atlas of Access to Myeloma Treatment, Myeloma Patients Europe’s Atlas Coaching Programme is an opportunity for MPE members to identify priorities and build successful advocacy strategies to improve access to myeloma treatments in every country in Europe.
