Contact the patient advisory group
The PREFER patient advisory group consists of four patient organisation: the European Cancer Patients Coallition (ECPC), who coordinates the work, Muscular Dystrophy UK (MDUK), European Patients Forum (EPF), and International Alliance of Patients’ Organizations (IAPO).
If you wish to get in contact with the patient advisory group, please contact Isabelle Manneh-Vangramberen, firstname.lastname@example.org.
Isabelle Manneh-Vangramberen, ECPC
Isabelle Manneh-Vangramberen leads patient input on PREFER and has worked with patients and patient empowerment for the last decade. She is ECPC's Projects Coordinator / Manager and is currently the appointed executive body for all EU funded projects participating in several European Union's Research and Innovation framework programmes in addition to working on 3 principal EU Policy files: the European Cross Border Health Directive, the General Data Protection Regulation, and Health Technology Assessment. She holds a double Bachelor of Science in Pharmacy and Pharmaceutical Sciences, a Master degree in Public Health, in addition to a post-master in European Studies specialising in EU Policy & Project Management.
Kathi Apostolidis, ECPC
Kathi Apostolidis (ECPC) provides input to PREFER methodology work. She is the Vice President of ECPC-European Cancer Patient Coalition and the President of the Executive Committee of ELL.O.K., the Hellenic Cancer Federation in Greece. Kathi Apostolidis is a Public Affairs Consultant with a very broad and diversified experience in regulatory and public affairs, diplomacy, strategy, marketing and communications with international companies and public service. Jointly with the President, she is responsible for strategy, strategic alliances, relations with the European Commission and other EU and national high level cancer stakeholders.
Francesco De Lorenzo, ECPC
Francesco De Lorenzo (ECPC) provides input on PREFER work on methodology, clinical case studies and the recommendations coming out of the project. Professor Francesco De Lorenzo is ECPC’s President and colon cancer survivor. He is medical doctor and professor of biochemistry from the University Federico II Naples. Furthermore, Prof. De Lorenzo has a rich experience in cancer advocacy being the co-founder, former Vice-President and Board member of ECPC. He is also the founder and President of the Italian Association of Cancer Patients (AIMaC), Italy's first Cancer Information Service (CIS), and of the Italian Federation of Cancer Patients Organisations (FAVO). Prof. De Lorenzo is very active in Italy's governmental network of cancer Institutes (ACC), Italy's National Cancer Plan Committee, and the National Volunteer Observatory of the Italian Welfare Ministry. He was previously engaged in Italian politics as a Member of Parliament, holding several ministerial mandates (Ministry of Health, 1989-1993).
Lydia Makaroff, ECPC
Lydia Makaroff (ECPC), provides input to PREFER management. She is ECPC’s Director. She has ten years' international experience in non-communicable disease research and policy development in academia, the pharmaceutical industry, and the non-profit sector. She conducted scientific research during her PhD at the Australian National University and as a senior post-doctoral fellow at the University of Washington Medical Center with support from the Australian Cancer Research Foundation and the Cancer Council. After working in Global Market Access at a pharmaceutical company, she joined the International Diabetes Federation as their Epidemiology and Public Health Manager. Her team quantified the global impact of diabetes and published research on prevalence, cost, and complications. She monitored national governments' commitments to non-communicable diseases, provided advocacy tools to national associations, and wrote policy papers on strategies to improve access to medicines and reduce health inequalities.
Valentina Strammielloas, EPF
Valentina Strammielloas (EPF) is part of the PREFER patient stakeholder advisory group.
Antonio Ciaglia, IAPO
Antonio Ciaglia (IAPO) leads patient input to PREFER's methodology work and also gives input to the project management. He carries out research activities and contributes toward the development of the IMI-GetReal Research Project. He brings formal qualitative and quantitative research expertise and has quickly developed knowledge and skills in health research and the drug/device development pathway. Before joining IAPO, Antonio undertook an AW Mellon Foundation-funded postdoctoral fellowship at the University of the Witwatersrand, Johannesburg, where he developed a research project in the field of comparative media policy and political communication. He also worked as a Policy and Research Intern at the Leicestershire-based Building and Social Housing Foundation, where he developed a research project on issues regarding high-rise housing policy in Britain and Europe. Antonio holds a PhD in Political Science from the Scuola Normale Superiore of Florence, an MA in Political Communication and a BA in Communication Studies from the University of Perugia.
Jenny Sharpe, MDUK
Jenny Sharpe (MDUK) leads the patient input in the clinical case studies. She also gives input to PREFER communications, methodology and recommendations. Jenny is MDUK’s Research Communications Officer and is primarily responsible for translating research findings into a language that patients can understand. This involves engaging with a range of people, including scientists, industry representatives, clinicians, and individuals and families affected by neuromuscular conditions. Prior to joining MDUK, she completed a PhD in mitochondrial biology at University College London.