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How to Address the Mental Health Needs of People in Vulnerable Situations? A Call for the EU Comprehensive Approach to Mental Health to Leave No One Behind

October 2023

28 November 2023 at 13:00 – 14:30 CET, Room A3H1, European Parliament

How to Address the Mental Health Needs of People in Vulnerable Situations? A Call for the EU Comprehensive Approach to Mental Health to Leave No One Behind
28 November 2023 at 13:00 – 14:30 CET, Room A3H1, European Parliament

About the event

Mental Health Europe and EURORDIS – Rare Diseases Europe, in collaboration with MEPs Sara Cerdas and Tilly Metz, are set to host a discussion concerning the European Commission’s most recent Comprehensive Approach to Mental Health.

Our event, titled ‘Addressing the risks and barriers faced by people in vulnerable situations‘, will take place on 28 November at the European Parliament in Brussels.

This gathering will focus on the European Commission’s Compehensive Approach for addressing the mental health challenges confronting EU citizens, particularly in the wake of the pandemic.

In June, the European Commission unveiled its plan to confront mental health issues affecting EU citizens, with a specific emphasis on post-pandemic scenarios. The Commission’s strategy will be underpinned by the following core principles:

  • Adequate and effective prevention
  • Access to high quality and affordable mental healthcare and treatment
  • Reintegration into society after recovery

In response to the Commission’s strategy, EURORDIS welcomed the Commission’s commitment to addressing mental health.

Our event will seek to advocate for and safeguard the mental health and wellbeing of individuals, including those with rare diseases, who encounter distinct and particular challenges to their mental well-being.

Agenda

Time        ItemSpeaker
3 minsWelcome and setting the scene.Kirsten Johnson, Fragile X International & EURORDIS
10 minsOpening statement on people living in vulnerable situations.MEP Cerdas, S&D
MEP Metz, The Greens/EFA
5 minsNew Communication & Future Actions.Dr. Isabel De la Mata, Principal Advisor for Health and Crisis Management, DG SANTE, European Commission 
7 minsPsychosocial approach in all policies.Fatima Awil, Policy & Knowledge Officer, Mental Health Europe
7 minsMultiple intersectional needs of populations in vulnerable situations.Yann le Cam, Chief Executive Officer, EURORDIS
30 minsPopulations in Vulnerable Situations – Panel Discussion on a human rights approach:
  • People living with Rare Conditions/Cancers (5 mins)
  • Children & Young People (5 mins)
  • Displaced persons, migrants (5 mins)
  • People living with a disabilities (5 mins)
  • People living with and affected by HIV (5min)
Kirsten Johnson, Fragile X International & EURORDIS (moderator)
Claas Röhl, President, NF Kinder, Austria
Bertrand Bainvel, UNICEF Representative to the EU and Director at UNICEF Partnership Office
Frohar Poya, Research & Outreach Lead European Network of Migrant Women (ENOMW)
Markaya Henderson, Health Policy and Project Officer, European Disability Forum 
Ann-Isabelle von Lingen, Policy and Programme Manager, European AIDS Treatment Group 
20 minsQuestions & AnswersAll speakers
5 minsClosing statement on people living in vulnerable situation.Claudia Marinetti, Director, Mental Health Europe
Yann Le Cam, Chief Executive Officer, EURORDIS
3 minsClosing remarksFacilitator

Meet our speakers

An event co-chaired by MEP Sara Cerdas, S&D and MEP Tilly Metz, The Greens/EFA, Co-chairs of the Coalition for Mental Health and Wellbeing in the European Parliament and strong allies of the Rare Disease Community.

Previously, she worked as Counsellor for Health and Consumers at the Permanent Representation of Spain to the EU, as Deputy Director General for Health Planning at the Spanish Ministry of Health and as Advisor to the Vice-Minister of Health. In addition, she has been a member of the Standing Commission of the Regional Committee, the Pan-American Health Organisation, the Inter-American Development Bank and the Spanish Agency for International Cooperation.

Dr de la Mata graduated in Medicine and Surgery at the University of the Basque Country in 1983 and holds post-graduate degrees from the University of Leuven and Paris. She is a specialist in Preventive Medicine and Public Health.


Fatima is Mental Health Europe’s Policy and Knowledge Officer. She has a background in human rights research, policy and advocacy with NGOs. Before joining Mental Health Europe, Fatima worked as the Advocacy and Policy Officer for End Female Genital Mutilation European Network. As well as being an intersectional feminist, Fatima is an experienced speaker and advocate, with over nine years of experience in advocacy and campaigning. Fatima holds a BA (Hons) in Law and Human Rights, and an LLM in International Law and International Relations.


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 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.


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.


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.


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 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.


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).