Myeloma Patients Europe (MPE) is the largest European myeloma patient organisation formed by 40 myeloma patient organisations in nearly 30 European countries. MPE is dedicated to providing education, information and support to member groups and to advocating at European, national and local levels for the best possible research and equal access to the best possible treatment and care. MPE initiated this project and is leading it.
Workgroup of European Cancer Patient Advocacy Networks (WECAN), in this project represented by MPE, is one of the strongest European communities of patient advocacy leaders of 21 European cancer patient umbrella organisations. Given oncology is a key field of patient advocacy and research and development, the leaders of those organisations have the power and mandate to bring about a fundamental change in how contractual relations between industry and patient advocacy are governed and implemented. WECAN is in a unique position to identify the key interests of patient organisations and advocates that need to be protected when signing agreements with the pharmaceutical industry.
WECAN is composed of the following 21 umbrella cancer organisations and represents more than 1,400 national patient organisations:
- European Men’s Health Forum (EMHF)
- Europa Donna
- Europa Uomo
- European Organisation of Rare Diseases (EURORDIS)
- European Morbus Waldenström Network
- International Brain Tumour Alliance (IBTA)
- International Kidney Cancer Coalition (IKCC)
- International Neuroendocrine Cancer Alliance (INCA)
- Lymphoma Coalition Europe (LCE)
- Leukaemia Patient Advocates Foundation (LePAF)
- Lung Cancer Europe (LuCE)
- MDS Alliance
- Myeloma Patients Europe (MPE)
- Melanoma Patients Network Europe (MPNE)
- Sarcoma Patient Advocates European Network (SPAEN)
- Thyroid Cancer Alliance (TCA)
- Childhood Cancer International (CCI, formerly ICCCPO)
- Pancreatic Cancer Europe Network
- Acute Leukemia Advocates Network (ALAN)
- Youth Cancer Europe (YCE)
Patient Focused Medicines Development, established in 2015, is an open and worldwide coalition of 33 partners representing patient organisations and advocates, pharma and health industry, and other key stakeholders aiming at understanding and improving Patient Engagement. The objective is to develop and subsequently deploy a standardised and globally adopted meta-framework on how and when patients should be involved throughout the research, development and lifecycle of medicines. PFMD’s outputs (e.g. Mapping and Networking tool and Framework building working groups) provide a platform to share best practices and means to measure the impact of patient engagement. PFMD’s strong governance ensures that patients are in the leading role together with industry and other stakeholders.
The Multi-Stakeholder Alignment Workgroup. Composed of representatives of all RAPP project partners with legal expertise from patient advocacy and pharmaceutical companies.
The project has included representation from 35 patient organisations, 16 pharmaceutical companies and 7 other project partners.