Eurordis - Rare Disease Europe

Yann le Cam, Chief Executive Officer, EURORDIS

Yann Le Cam is a patient advocate who has dedicated over 30 years of professional and personal commitment to health and medical research NGOs in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases. He holds an MBA from HEC Paris. He has three daughters, the eldest of whom is living with cystic fibrosis. Yann Le Cam was one of the founders of EURORDIS-Rare Diseases Europe in 1997 and has been the organisation’s Chief Executive Officer since 2000. Yann initiated Rare Diseases International (RDI) in 2009, for which he is an elected member of the Council and Chair of the RDI Advocacy Committee. He was a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and is its vice-chair. Yann is a co-chair of the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease since its launch in 2018. Yann is a member of the World Economic Forum’s Health Stewards Board since 2020 and of its Global Precision Medicine Council since 2019.From 2016 – 2019, Yann Le Cam served as a member of the European Medicines Agency’s (EMA) Management Board. He was also one of the first patient representatives appointed to a committee at a medicines regulatory agency when he was appointed to the Committee for Orphan Medicinal Products (COMP) at the EMA, where he served for 9 years and was its elected vice-chair for 6 years. He also served on the Management Board and Executive Committee of the French HTA agency for 5 years.

Claas Röhl, President, NF Kinder, Austria

Claas Röhl studied communication science at the University of Vienna, after graduating from an engineering school. When his daughter was diagnosed with a rare disease called Neurofibromatosis he began to educate himself on this disease and did several educational programs on patient advocacy, patient involvement in research and fundraising. He set up the Austrian patient organization NF Kinder in Dec 2013 and in collaboration with Medical University of Vienna NF Kinder has set up Austrias first center of expertise for Neurofibromatosis in 2018. On a national level Claas Röhl is also chair of EUPATI Austria, co-chair of the umbrella organization for oncological patient organizations «Allianz der onkologischen PatientInnenorganisationen“, a member of the board of the Austrian umbrella organization for Rare Diseases «Pro Rare Austria», and he is a member of an expert advisory board for oncology at the Austrian health ministry. Claas Röhl is also involved in several international organizations, like the European umbrella organization for NF patient organizations «NF Patients United» that he chairs, the ERN GENTURIS where he serves as a member of the executive committee, or as a member of IHI’s pool of international patient experts.

Bertrand Bainvel, UNICEF Representative to the EU and Director at UNICEF Partnership Office

Mr. Bertrand Bainvel, a French national, is the UNICEF Representative to the European Union Institutions and the Director of UNICEF Partnerships Office in Brussels since 13 February 2023.Previously, Mr. Bainvel was the Deputy Regional Director, and the Acting Regional Director, for UNICEF Middle East and North Africa. Before his role in the MENA region, he served as UNICEF Representative in the Republic of the Union of Myanmar. Mr. Bainvel served as UNICEF Head of the Partnership Office in Moscow, and Representative to the Russian Federation, and UNICEF Representative in Jamaica.

Frohar Poya, Research & Outreach Lead European Network of Migrant Women (ENOMW)

Afghan by origin, Frohar is an experienced migration researcher and oral historian. With MA in Cross-Cultural Psychology and Community Oral History, she has led refugee research projects in the UK, and worked for multiple European projects including as Migrant and Refugee Communities Oral History Trainer.  She also has worked with women victims of domestic violence and developed trainings on women’s rights for NGOs in Afghanistan.

Markaya Henderson, Health Policy and Project Officer, European Disability Forum

Joined EDF in 2023
Background: MSc Global Mental Health – University of Glasgow, BA Humanities and Social Sciences – Western Washington University
Prior to EDF, Markaya worked as a Project and Patient Engagement Officer for the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA). There she specialised in patient involvement in EU and industry funded research projects and led internal capacity building activities for national member associations. Before moving abroad, she worked as a complimentary healthcare provider, offering trauma-informed bodywork through private practice for over 5 years. She has also volunteered with a variety of support organisations including food banks, youth character mentoring and mental health organisations.

Ann-Isabelle von Lingen, Policy and Programme Manager, European AIDS Treatment Group

Ann Isabelle von Lingen has been policy and programme manager at the European AIDS Treatment Group (EATG) since 2021 where she leads person-centered prevention, treatment, and care for people living with or affected by HIV and associated infections. She has over 20 years of experience in developing and implementing community research and advocacy projects aiming to update legal-policy frameworks and service delivery models. Previously, Von Lingen worked in the field of anti-discrimination and social inclusion and justice reform including at the Open Society Foundations, and for the last 10 years she has focused in the area of public health and HIV.

Claudia Marinetti, Director, Mental Health Europe

Dr Claudia Marinetti is director at Mental Health Europe (MHE) and has extensive expertise in the areas of equity and health, and their social determinants With over 10 years of experience in management, policy, advocacy and research, Claudia has worked across sectors to improve the well-being of European citizens, including approaches based on human rights, access to quality services, HiAP, and social inclusion.Prior to joining MHE, she worked for EuroHealthNet, a not-for-profit partnership working on public heath, disease prevention, health promotion, and inequality reduction. She has also worked for K.U. Leuven and briefly for the University of Oxford’s Centre for Criminology.
Claudia is a graduate of the University of Padua (Italy) and holds a PhD in Social and Applied Psychology from the University of Oxford (UK).