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Results of MPE members participation in EMA survey on bortezomib

As bortezomib, an anti-myeloma medicine, is licensed as both an intravenous (IV – through the vein via a drip) and subcutaneous medicine (through the skin, via an injection), the European Medicines Agency (EMA) recently conducted a survey to understand which method was most commonly used across Europe. They also asked about the location of administration…

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Myeloma Patients Europe webinar on CAR-T cell treatment

Patient advocates, patients and caregivers have heard a lot about CAR-T cell treatment and its potential in myeloma. However, there are still a lot of questions about its benefits, its challenges and its role in treating myeloma. With the aim of providing an overview of CAR-T cell treatment in myeloma, healthcare professional expectations and an…

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Open call to participate in the Advocate Development Programme (ADP)

Patient input into medical research is becoming increasingly important. The MPE Advocate Development Programme aims to help myeloma and AL amyloidosis advocates understand the research and development process of drugs, from the preclinical stages through to post-marketing surveillance and national access. Topics include clinical trial design, regulation, pricing and health technology assessment (HTA). The programme…

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WECAN workgroup of patient advocates and industry experts releases guiding principles for reasonable legal agreements between patient advocates and pharmaceutical companies

A collaboration between patient advocates and pharmaceutical companies usually requires both parties to sign contracts for different engagements such as for advisory, consultancy, collaborative or speaker engagements. These contracts usually cover areas such as confidentiality, intellectual property, data protection, financial compensation and travel expenses. However, according to the Workgroup of European Cancer Patient Advocacy Networks…

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Horizon2020 CARAMBA video on CAR-T cell therapy now available in five languages

At the recent European Haematology Association (EHA) Annual Congress 2018, Myeloma Patients Europe (MPE) and Video Journal of Hematological Oncology (VJHemOnc), filmed an interview with Dr Michael Hudecek (University of Würzburg, Germany) on the Horizon2020 CARAMBA project. The video was recorded in English and has now been translated into four additional languages: French, German, Spanish…

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WECAN Survey on Fair Market Value

The contribution of patients and patient experts provides tangible value to other stakeholders and society that should be fairly compensated. Currently, there is no transparent and consistent system for financial compensation in place that reflects the level of individual contribution and expertise.

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