MPE Newsletter

MPE activities

Survey on myeloma patient information needs in 12 countries

Myeloma Patients Europe (MPE) has launched a survey for European myeloma patients to understand their information needs. If you are a myeloma patient who has received at least one prior treatment or is currently on their first treatment, MPE would be very grateful if you would take the time to complete the survey. The survey has been developed in collaboration with the pharmaceutical company Amgen and will be run in 12 European countries: Austria, Finland, France, Germany, Hungary, Israel, Netherlands, Poland, Romania, Sweden, Switzerland and the UK. You can find the country-specific survey links and tranlations in all relevant languages in the link below.

 

 

MPE webinar on personalised medicines

MPE held a webinar on personalised medicines in myeloma with the aim of providing an overview of how haematologists adapt treatment to each patient and to discuss the barriers healthcare systems have to face. The talk was given by Dr Annemiek Broijl, Department of Hematology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands.

Cancer patient community

 

WECAN Academy 2019

The first WECAN Academy organised by the Workgroup of European Cancer Patient Advocacy Networks (WECAN) will take place 6-9 July 2019 in Frankfurt, Germany. Tomorrow our CEO and also WECAN chair, Ananda Plate, will open this training programme aimed at growing the knowledge and skills of more than 100 European leading patient advocates, and those who joined the community more recently.
 
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Survey on Cross-Border Access to Clinical Trials

This survey is part of the research project “Cross-Border Access to Clinical Trials in Europe”, a joint study conducted by the European Forum for Good Clinical Practice (EFGCP), the European Organisation for Research and Treatment of Cancer (EORTC), KU Leuven and Patvocates, with the support of the European Federation of Pharmaceutical Industries and Associations (EFPIA). The purpose of the survey is to gain insights into the relevance, occurrence, needs and challenges that different stakeholders are currently facing in the context of cross-border access to clinical trials in Europe.

Complete the survey here
 

MPE member's activities

 

Myeoma UK releases a report on patient preferences in HTA

Our member in the UK, Myeloma UK (MUK) has released a new report on collecting and using patient preference data in Health Technology Assessment (HTA) in collaboration with the National Institute for Health and Care Excellence (NICE). The aim of this project was to understand more about the way patient preference data can be collected and used in decisions about new medicines and treatments.
This report suggests that there is a clear scope for better use of quantitative patient preference studies. Findings show clearly how myeloma impacts the lives of patients and how important it is that these preferences are captured and used to ensure new treatments reflect the needs and preferences of patients and family members living with myeloma and other conditions.

 

If you are an MPE member and you would like to share your activities in this e-bulleting, please contact Ana Vallejo: vallejo@mpeurope.org.