Paving the way for rare diseases patients: Addressing unmet needs for an improved quality of life and care
Empowering scleroderma patients through policy and advocacy
14 November 2023, European Parliament, 2pm-4pm, Room 3H1
On 14 November, MEP Patrizia Toia (S&D, IT) and FESCA are hosting an event on “Paving the way for rare diseases patients: Addressing Unmet Needs for an Improved Quality of Life and Care” in the European Parliament.
Building upon the momentum of 2022, FESCA has continued its successful ‘Find the Light to Bloom’ campaign in 2023′, illuminating the unmet needs of people living with scleroderma and the challenges they face regarding diagnosis, treatment and patient quality of life.
As part of the “Find the Light to Bloom” campaign, FESCA has been looking into the challenges faced by those living with this life limiting disease, from limited access to treatment and care, which can vary across the EU, to the impact on people’s emotional and mental wellbeing, as well as their performance and independence at work. Lack of public access to non-drug treatments including psychological support, adequate labour market policies, as well as affordable and accessible care services remain key challenges that people living with scleroderma must overcome on a daily basis.
In light of these, the upcoming event seeks to convene stakeholders from the public, private, and civil society sectors to explore the findings of recent research on the perspective of patients regarding the socio-economic impact of the scleroderma and the care journey. Additionally, the event will emphasize the potential advantages arising from ongoing health-related legislative proposals aimed at addressing the underlying factors, including the European Commission’s comprehensive approach to mental health, the EU Care Strategy, and the revision of the EU pharmaceutical legislation.
The below agenda has been created to provide a multifaceted approach to the topic, as well as allow speakers from different backgrounds to provide their opinion. MEP Patrizia Toia will be opening the event and together with Sue Farrington, President of FESCA will allow for fruitful discussions of the panelists.
Stay tuned as we update the agenda with the panelists!
Opening Remarks by Patrizia Toia, Member of the European Parliament (S&D, IT)
Presentation of ‘Through Dance We Bloom’ video
Through dance, we express emotion and feeling and can tell stories with the movement of our bodies. ‘Through Dance We Bloom’ was developed as part of FESCA’s mission to call for equal treatment and care across Europe for people with scleroderma.
Report on Breaking Down the Social Impact of Scleroderma
Sue Farrington, President of the Federation of European Scleroderma Associations, FESCA
The report is based on a survey that was launched in 2023 and that sought to measure how different countries perform against criteria related to scleroderma diagnosis, care and management, collecting data from patient organisations worldwide. The report provides insights into patients’ experience in getting a diagnosis, receiving medical care, and managing their condition, as well as the socio-economic impact of this disabling disease. It also highlights best practices and identifies gaps where urgent policy action is needed.
Panel I – Unveiling the Hidden Challenges: Exploring the Social Impact of Scleroderma on Quality of Life and Holistic Well-being
During this panel, we aim to do discuss some of the socio-economic challenges and unmet needs of patients living with rare conditions, from psychological support and labour policies to work-life balance for carers. A multifaceted panel of five speakers will share their opinions and expertise in the field and provide a well-rounded discussion.
Panel II – Breaking Barriers in Scleroderma Care: Addressing Unmet Medical Needs
The second panel will discuss the revision of the EU pharmaceutical legislation, with a particular focus on addressing unmet medical needs through the regulation. Speakers with a policy background, health expertise and other knowledge areas will create a dynamic discussion.
Wrap-up and Closing Remarks
Patrizia Toia, Member of the European Parliament (S&D, IT)
Patrizia Toia, Member of the European Parliament (S&D, IT)
Patrizia Toia is an Italian politician and Member of the European Parliament, part of the group of the Progressive Alliance of Socialists and Democrats. She graduated in political science from Università degli Studi in Milan, Italy and later complemented her studies with a degree in strategic planning from the Bocconi University in Milan. Ms Toia’s career started off as Municipal Councilor of Vanzago (Milan), then Director of Planning Service at Lombardy Region and regional Councilor in charge of different portfolios. She was then Member of the Chamber of Deputies and subsequently Member of the Senate between 1996 to 2004. She is currently Vice-Chair of the Committee on Industry, Research and Energy (ITRE) in the European Parliament. From 2021 to 2022, she was part of the European Parliament’s Delegation to the Conference on the Future of Europe (COFOE). Ms Toia’s interest in health led her to become a member of the MEP Heart Group, MEPs Against Cancer Group, member of the European Parliament Intergroup on Cancer as well as substitute member of the Special Committee on Beating Cancer (BECA).
Donata Meroni is Head of the Unit ‘Health monitoring and cooperation, Health networks’, in the Public Health Directorate of DG SANTE, European Commission. She was previously Head of the Unit in the same Directorate dealing with ‘health Promotion and diseases prevention and funding instruments’, and head of the ‘health and food safety’ Unit in the Executive Agency for Consumers, Health, Agriculture and Food (CHAFEA) in Luxembourg.
She has been working with the Commission since 2002, when she joined DG SANCO to work at the Food and Veterinary Office in Ireland.
She had worked in Italy for 13 years, in both private and public sector before joining the Commission.
Sue Farrington is currently President of the Federation of European Scleroderma Associations (FESCA) and Chief Executive of Scleroderma & Raynaud’s UK (SRUK). In addition, Sue is Co-Chair of the Rare Auto-Immune Rheumatic Disease Alliance (RAIRDA), a partnership established in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases. She is a member of the UCL Partners Academic Health Science Centre Infection, Immunity and Inflammation Patient and Public Advisory Group. Since 2013, Sue has been Chair of the Patient Information Forum, an organisation for people working in consumer health information – championing the role that quality information plays in the delivery of positive health outcomes. Sue has extensive experience in senior leadership roles, working across the private, public and voluntary sector, with a background in strategic marketing & communications and broadcast journalism.
Ilaria Galetti is vice president of FESCA, the Federation of European Scleroderma Associations, Systemic Sclerosis ePAG representative in ERN (European Reference Network) ReCONNET, member of the DITA Task Force, of the AMR patient group and member of the Panel of experts of Rare 2030.
She always tries to collect the needs of the wider community and to interact with clinicians to improve the cure and the QoL of SSc patients. As patient representative, she often participates in consensus meetings aiming at creating diagnostic recommendations and risk scores or in CABs for the research and the development of new potential therapies for SSc. In ERN ReCONNET she has been involved in several activities such as in the State of the Art of CPGs and in SSc patient’s care pathways, always collecting the voice of the European SSc community and giving back the outcomes of the activities.
Dr. Linda Kwakkenbos is the Co-Director of the Scleroderma Patient-centered Intervention Network (SPIN), an international team devoted to developing and testing online tools to support well-being among people with scleroderma. She is also a lecturer and researcher at the Behavioural Science Institute of Radboud University, Netherlands. Dr. Kwakkenbos’ research focuses on the development and testing of patient-reported outcome measures, novel research methodologies, and the development of interventions that help contribute to better disease management in chronic diseases, focusing on rare diseases, such as scleroderma.
Dr. Kwakkenbos received a Postdoctoral Fellowship from the Fonds de la Recherche en Santé Québec (2013-2015) and was awarded the prestigious Banting Postdoctoral Fellowship from the Canadian Institutes of Health Research (2015-2017), and recently (2018) received a grant from the World Scleroderma Foundation to develop patient decision aids for people with scleroderma.
Michael Oeschger is the Chairman of the German Scleroderma Association.
Michael has a degree in Business Administration, and has had a succesful career in the area of contract logistics. He became Head of Logistics at a large food producer at a young age, and thrived in this position, showcasing not only his analytical acumen, but also his leadership skills.
However, life took an unexpected turn when, at the age of 31, Michael was diagnosed with systemic sclerosis. The severity of the condition necessitated a pause in his career, forcing him to make the challenging decision to step back from the professional life he had built. The hurdles posed by systemic sclerosis were not only physical but also emotional and professional.
After a long period of rehabilitation and treatment and even an organ transplant, he re-entered the workforce on a part-time basis, determined to continue contributing to the field he was passionate about despite the constraints imposed by his health.
In the face of adversity, Michael found purpose and community through his involvement in the German Scleroderma Association, a support group for individuals battling the same condition. For the past nine years, he has been an active member, offering not just his personal experiences but also serving as a patient representative for scleroderma.
Izabela Taborska is a Legal and Policy Officer in the European Commission’s Directorate General for Health and Food Safety (DG SANTE), Unit D1 – Medicines: policy, authorisation and monitoring. She works on the revision of the EU pharmaceutical legislation in the part concerning medicinal products for rare diseases.
Izabela has over twelve years of experience in the European Commission. Before joining DG SANTE (in 2022), she worked for six years as a Legal Officer in the Directorate General for Internal Market, Industry, Entrepreneurship and SMEs, most recently in the Unit responsible for Bioeconomy, Chemicals and Cosmetics.
Victor Maertens is the Government Affairs Director for the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE).
Victor leads EUCOPE’s policy work in the area of Orphan therapies and Cell and Gene Therapy. Prior to joining EUCOPE, Victor worked for Brussels-based consultancies, providing pharmaceutical companies, trade associations, and NGOs with advocacy, strategy, and communications advice.
His experience and interests include advanced therapy medicinal products, antimicrobial resistance, orphan medicinal products, blood policy, and neglected tropical diseases.