Patients in PREFER: Partners and advisors
Our patient partners play a central role, making sure the patient perspective is present at all levels in the PREFER project.
The PREFER consortium includes four patient organisation: the European Cancer Patients Coalition (ECPC), Muscular Dystrophy UK (MDUK), European Patients Forum (EPF), and International Alliance of Patients’ Organizations (IAPO). Together they form the PREFER Patient Advisory Group, coordinated by ECPC.
Patient Advisory Group members are directly involved in activities within all work packages of PREFER, sharing common expectations and ensuring that the methodologies identified correspond to the patient views, experiences and preferences. We also have a number of individual patients with rheumatoid arthritis on board through the clinical research partners at the University of Birmingham. The patient perspective is complemented by the presence of EURORDIS, who are members of the broader Stakeholder Advisory Board.
Patient advisory group composition
- European Cancer Patients Coallition (ECPC)
- Muscular Dystrophy UK (MDUK)
- European Patients Forum (EPF)
- International Alliance of Patients’ Organizations (IAPO)
Stakeholder advisory board members
- European Organisation for Rare Diseases (EURORDIS)
ECPC is the largest European cancer patients' umbrella organisation representing more than 400 organisations in 46 EU and non-EU countries. Their motto is "Nothing about us without us".
European patient groups
EPF is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe. Our members represent specific chronic disease groups at EU level or are national coalitions of patients.
Global patient alliances
IAPO is a unique global alliance, committed to improving the lives of patients from all around the world. We nurture relationships with members, partners and all those involved in healthcare, and build dialogue with decision-makers around the world to promote patient-centred healthcare.
Patients with rare diseases
Muscle-wasting conditions are very rare, affecting just over one in every 1,000 people. Muscular Dystrophy UK is the charity for the 70,000 people living with muscle-wasting conditions in the UK, bringing together people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions.