Sustainability in Action:
Rethinking the Rare Disease Paradigm
from Prevention to HTA and Access
Thursday March 27, 2025 | TECHNOPOLIS CITY OF ATHENS Gasholder 1 – Auditorium “Miltiadis Evert” & Live Online
Friday March 28, 2025 | Live Online
In the context of the actions to develop Health policies for Rare Diseases, Rare Diseases Greece (RDG), a member of EURORDIS-Rare Diseases Europe, Rare Diseases International (RDI) and Boussias Events, organized the 5th International Conference on Rare Diseases, entitled “Sustainability in Action: Rethinking the Rare Disease Paradigm from Prevention to HTA and Access”, on Thursday 27th of March (Hybrid) & Friday 28th of March, 2025 online. With the presence of 60 leading Greek and international speakers from the fields of Health, Politics and Research, this year’s Conference highlighted the urgent need to review the Rare Diseases management model, as well as the need for collaboration between Governments, Regulatory Authorities, Pharmaceutical Industry and Patient Organizations, with the aim of transitioning from fragmented solutions to a holistic and sustainable model of care. The discussions aimed to inspire actionable strategies, from enhancing prevention efforts to optimizing health technology assessments (HTAs) and ensuring equitable access to therapies.
The Greek Government was represented by Adonis Georgiadis, Minister of Health, Irene Agapidaki, Alternate Minister of Health, Aris Angelis, Secretary General of Strategic Planning, Hellenic Ministry of Health, Lilian Venetia Vildiridis, Secretary General of Health Services, Hellenic Ministry of Health and Vassilis Koutsiouris, Office Director of the General Secretariat of Strategic Planning, Hellenic Ministry of Health. Important speakers contributed to the success of the proceedings, among them: Pr. Mohamed Hassany, Assistant Minister of Health for Projects and Public Health Initiatives, Egypt, András Tivadar Kulja, Member of the European Parliament, PPE, Hungary, Victor Maertens, Government Affairs Director at EUCOPE, Daria Julkowska, Scientific coordinator of the European Rare Diseases Research Alliance (ERDERA)/Assistant Director of the Thematic Institute for Genetics, Genomics & Bioinformatics (IT GGB) at INSERM, Anja Schiel, Senior Advisor, Methodologist in Regulatory and Pharmacoeconomic Statistics Norwegian Medicinal Products Agency (NOMA), Debra Bellon, Strategic Engagement Manager, Rare Diseases International, Myriam Rai, Director of Global Relations & Initiatives at Friedreich’s Ataxia Research Alliance (FARA), Marco Greco, EPF President, Hélène Le Borgne, Policy Officer – Research Programmes, European Commission, DG RTD, Unit D2, Valentina Strammiello, European Patients’ Forum (EPF), Dr Jose A. Valverde, HTA Team leader, European Commission DG SANTE, Unit C.2 – State of Health, European Semester, Health Technology Assessment, Anna Greka, Professor Harvard Medical School, Brigham and Women’s Hospital, C,ORE Institute Member, Broad Institute of MIT and Harvard, Founder and Chair Ladders to Cures Accelerator Dr. Nandia Gogozotou, NE President at EOPYY, President of the Drug Price Negotiation Committee, Flora Bacopoulou, Professor of Pediatrics-Adolescent Medicine-Clinical Pharmacology, Head, HTA Committee, Greek Ministry of Health, UNESCO Chair Adolescent Health Care, Medical School, NKUA Georgios Tsivgoulis, Professor & Chairman of Second Department of Neurology, School of Medicine, NKUA, “Attikon” Univ. Hospital, President of the Hellenic Neurological Society, Chair of National Commitee for Rare Diseases and Babis Karathanos, Special Advisor to the Minister of Health. The participation of all the distinguished Greek and international speakers provided a very thorough perspective of the ongoing projects and issues pertaining to the rare diseases landscape.
The Conference was attended by more than 350 participants from 15 countries around the world, while the conference moderators, Vasilis Karatzias, President, Rare Diseases Greece, President, Hellenic Friedreich’s Ataxia Association, Director of the Office of Legal Advisers, NATO Rapid Deployable Corps, and Dimitrios Athanasiou, Vice President, Rare Diseases Greece, EMA PCWP Member, GPA, 95, WDO Board Member, referred to the crucial point in promoting the Rare Diseases agenda, both nationally and globally,.
The Conference was held under the patronage of the European Parliament, and the auspices of the Greek Ministry of Health and the City of Athens, with the support of ERDERA – European Rare Diseases Research Alliance, EUCOPE – European Confederation of Pharmaceutical Entrepreneurs and RDI – Rare Diseases International.
About the Conference
Rare diseases impact over 300 million people worldwide, yet systemic challenges persist—delayed diagnoses, fragmented care, and limited access to life-saving treatments. This conference brings together global leaders from academia, healthcare, industry, policy-making, and patient advocacy to address these issues comprehensively.
Under the theme, “Sustainability in Action: Rethinking the Rare Disease Paradigm from Prevention to HTA and Access”, this year’s conference aspires to stimulate dialogue and cooperation towards advancing a comprehensive rare disease strategy that promotes sustainability and equity within healthcare ecosystems. The discussions aim to inspire actionable strategies, from enhancing prevention efforts to optimizing health technology assessments (HTAs) and ensuring equitable access to therapies.
#ICORD 2025 underscores its commitment to improving the quality of life for individuals affected by rare diseases by advocating for equity in healthcare, fostering innovation, and prioritizing inclusivity. Its goal is to turn vision into action uniting the global community to rethink the rare disease paradigm and therefore drive sustainable progress for the millions of individuals and families affected worldwide. Together, we can create a future where no one is left behind.
Don’t miss this unique opportunity to be part of a transformative event that is paving the way for advancements, collaborations, and hope in the realm of rare diseases.
Key topics include
- Sustainability in Rare Disease Research and Prevention
- Health Technology Assessment (HTA) in Rare Diseases
- Access to Treatments and Therapies
- Policy and Governance
- Innovative Solutions
- How can we build sustainable research ecosystems for rare diseases?
- Preventative strategies: Early detection, genetic screening, and risk reduction in rare diseases.
- The challenges and opportunities in HTA for rare diseases.
- Evaluating treatments: Impact, cost-effectiveness, and access in rare disease contexts.
- Meaningful Patient involvement in HTA
- Ensuring equitable access to rare disease treatments globally.
- Public and private sector roles in ensuring sustainable healthcare access.
- Best practices in policymaking for rare diseases.
- International cooperation and legislative frameworks for improved access to medicines and care.
- Successful initiatives, models, and pilot programs in rare disease prevention and treatment.
- Cutting-edge technologies and research breakthroughs.
Keynote Speakers & Panelists
The conference will feature a wide range of international thought leaders and experts, who will deliver insightful talks and participate in panel discussions, including:
- Leaders in rare disease research and treatment development
- HTA experts with experience in rare diseases
- Advocates and patient representatives
- Policy makers and healthcare administrators
- Industry professionals from pharmaceutical and biotechnology sectors
Speakers
Who should Attend?
- Researchers and scientists in the field of rare diseases
- Healthcare professionals (doctors, nurses, genetic counselors)
- Policymakers, regulators and government representatives
- Representatives from the pharmaceutical and biotech industry
- Non-governmental organizations (NGOs) and patient advocacy groups
- HTA professionals
- Journalists covering healthcare and rare disease topics
What to Expect
- Engaging Keynotes: Hear from renowned thought leaders shaping the future of rare disease management.
- Interactive Panels: Participate in discussions with experts tackling challenges across the care continuum.
- Fireside chats and Rapid-fire Q&As: Attend interactive discussions addressing the challenges and opportunities in the field of rare diseases
- Networking Opportunities: Build meaningful connections with peers, collaborators, and advocates from around the world.
Become a Sponsor
Download Conference Brochure 2025
Testimonials
under the patronage of the European Parliament
Organized by:
Grand Sponsor
GENESIS Pharma was one of the first pharmaceutical companies in Europe to specialize in the marketing, sales and distribution of biopharmaceutical products and is currently the largest by turnover among Greek companies focusing on innovative medicines. Through long-standing strategic partnerships with some of the leading global pharmaceutical companies committed to cutting-edge R&D, GENESIS Pharma has created a strong portfolio of innovative and high therapeutic value pharmaceutical products for more than 30 severe and rare diseases.
Sponsors
Amgen is committed to unlocking biology’s potential to help patients with serious illnesses by discovering, developing, and delivering innovative therapeutics. Since 1980, it has grown into a leading independent biotechnology company, reaching millions worldwide. Focused on high unmet medical needs, Amgen leverages its expertise to improve health outcomes and transform lives with groundbreaking medicines and a promising pipeline.
AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialisation of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in Cambridge, UK, AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide.
CSL Behring is a global biotherapeutics leader driven by our promise to save lives. A global leader in developing and delivering high-quality medicines that treat people with rare and serious diseases. Our treatments offer promise for people in more than 100 countries living with conditions in the immunology, hematology, cardiovascular and metabolic, respiratory, and transplant therapeutic areas.
IQVIA (NYSE:IQV) is a leading global provider of information, innovative technology solutions and contract research services dedicated to using analytics and science to help healthcare stakeholders find better solutions for their patients. Solutions are powered by the IQVIA CORE™, which combines big data, advanced technology, analytics and extensive industry knowledge. Formed through the merger of IMS Health and Quintiles, IQVIA has approximately 70,000 employees worldwide. Learn more at iqvia.com.
At Johnson & Johnson, we believe health is everything. Our strength in healthcare innovation empowers us to build a world where complex diseases are prevented, treated, and cured, where treatments are smarter and less invasive, and solutions are personal. Through our expertise in Innovative Medicine and MedTech, we are uniquely positioned to innovate across the full spectrum of healthcare solutions today to deliver the breakthroughs of tomorrow, and profoundly impact health for humanity.
Learn more at www.janssen.com/greece
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Founded in 1896 in Basel, Switzerland, Roche has grown into the world’s largest biotechnology company and the global leader in in-vitro diagnostics. The company pursues scientific excellence to discover and develop medicines and diagnostics for improving and saving the lives of people around the world. We are a pioneer in personalised healthcare and want to further transform how healthcare is delivered to have an even greater impact. To provide the best care for each person we partner with many stakeholders and combine our strengths in Diagnostics and Pharma with data insights from the clinical practice
We are an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives. Our team, across the world, is dedicated to transforming the practice of medicine by working to turn the impossible into the possible. We provide potentially life-changing treatment options and life-saving vaccine protection to millions of people globally, while putting sustainability and social responsibility at the center of our ambitions.
Takeda is the largest pharmaceutical company in Japan and has a strong presence in over 80 geographies across the world. With a history for over two and a half centuries, we focus on innovations that contribute to making a difference in people’s lives in our core therapeutic and business areas, including gastroenterology and inflammation, rare diseases, plasma-derived therapies, oncology, neuroscience and vaccines.
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