“The importance of multi stakeholder cooperation to foster rare disease therapeutic innovation“

Alexander Natz, Secretary-General of EUCOPE, Belgium
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“Innovation needed in building a pathway from diagnosis to access”

Bernard J Grimm, Healthcare Biotechnology Director at EuropaBIO
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“Diagnosing Undiagnosed Rare Disease Patients: Tools and Resources to strengthen the voice of the undiagnosed Rare Disease Community”

Lauren Roberts, Director of Support, Genetic Alliance UK/ SWAN U
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“What’s Next After the Search for a Diagnosis? The Future of Specialised Health Services“

Artemis Doulgeraki, MD, PhD, MRCPCH, FRCPCH, Consultant Paediatrician, Head of the Department of Bone and Mineral Metabolism, Institute of Child Health
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“The role of Patient Organizations in supporting diagnosis and beyond“

Georgia Moraiti, MSc, Social Worker, MDA Hellas
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“Patient Preferences in NBS: The Duchenne Example“

Elizabeth Vroom, Chair, World Duchenne Organization, Directeur, Duchenne Parent Project Nederland, Board Member, EURORDIS
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“Access to Care for RD patients in COVID-19 times“

Persephone Augoustides-Savvopoulou, MD, PhD, Emeritus Professor, Medical School, Aristotle University of Thessaloniki, Chairman and Scientific Adviser, “KRIKOS ZOIS” Greek Society for Patients and Friends of Patients with Inherited Metabolic Diseases
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“European Reference Networks – Recommendations to achieve a mature ERN system in 2030“

Ines Hernando, Director of European Reference Networks and Healthcare, EURORDIS
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“Centers of Expertise in Greece“

Leonidas Stefanis, MD, PhD, Professor of Neurology, National and Kapodistrian University of Athens Medical School, Director, First Department of Neurology Hospital Eginition, Athens, Greece
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“Advancing care for Rare Diseases“

Panagiota Mitrou, Internist-Diabetologist, Head of Independent Department of Therapeutic Protocols and Patient Registries, Ministry of Health
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“Equitable Access to care and cure in remote areas“

Evanthia Orfanou, President of the Association of Cancer Patients & Rare Diseases of the Prefecture of Evros “Together for Life” and Deputy Secretary of the Hellenic Patients Union
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“RD as an EU Priority“

Daria Julkowska, Coordinator of the European Joint Programme on Rare Diseases
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“Advancing Research for Rare Diseases in GR“

Christos Dimas, Deputy Minister for Research and Innovation, Ministry of Development and Investments, Greece
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“Key learnings in designing and conducting clinical trials for rare diseases“

Diego Ardigò, MD PhD, Head of R&D, Global Rare Diseases, Chiesi Farmaceutici S.p.A
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“The role of Clinical Networks in performing Clinical Trials in RDs“

Emmanuel Roilides, Professor of Pediatrics – Infectious Diseases, Director of the 3rd Pediatric Clinic, Aristotle University of Thessaloniki
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“The role of research in the hospital paradigm“

Adamantia Englezopoulou, MSc, PhD(c), Deputy Manager of General Hospital of Athens “LAIKO”, Vice President of Greek National Committee of Rare and Complex Diseases
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“Innovation in the EU Policies“

Bernard J Grimm, Healthcare Biotechnology Director at EuropaBIO
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“Gene therapy in Rare diseases: opportunities and challenges“

Apostolia Poimenidou, Sr Medical Advisor Rare Diseases Greece-Cyprus-Malta Pfizer
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“The challenging path to bring a gene therapy to patients with an ultra-rare disease“

Thomas Bols, Head of Government Affairs and Public Policy EMEA and APAC, PTC Therapeutics
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“Navigating the Access Pathway with an one time Gene Therapy”

Christos Dakas, Executive Director, Country Manager Greece, Cyprus and Malta, NOVARTIS Gene Therapies
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“Policy recommendations for a new policy framework for rare diseases in Europe: Rare 2030“

Victoria Hedley, Rare Disease Policy Manager, Newcastle University Institute of Translational and Clinical Research, Co-Lead of the Newcastle Centre for Rare Diseases
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“The Pharmaceutical Strategy in Europe, the unmet needs and orphan regulation“

Fabio D’ Atri, Policy Officer, European Commission
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“Cross border and its application to RDs“

Michela Gabaldo, Head Alliance Management & Regulatory Affairs, Fondazione Telethon, Milan, Italy
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“Ensuring accesible, available and affordable treatments for people living with rare diseases”

Simone Boselli, Public Affairs Director, EURORDIS
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“RARE IMPACT: Collaboration to increase access in Europe”

Karolina Hanslik, Project Senior Manager, EURORDIS
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“Orphan drugs: Is the pace of scientific breakthrough translated in both reimbursement and access?”

Dimitrios Pantazis, President, Institute of Pharmaceutical Research & Technology (IFET)
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“Navigating the Access pathways in the Greek Healthcare system“

Hara Kani, Head Department of Planning, Monitoring and Drugs Administration in EOPYY
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“Early Access Schemes for orphan drugs“

Sofia Drouska, MSc on Clinical Pharmacy, National Organization for Medicines (EOF) Pharmaceutical Studies & Research Division, Responsible for Early Access (compassionate use) requests, Representative of EOF for the Early Access Electronic Pre-approval System
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“Cystic fibrosis registry: A step closer to access?“

Dimitris Kontopidis, Patient Advocate & Social Entrepreneur Co-Founder & General Director, Humane Social Enterprise Honorary President Hellenic Cystic Fibrosis Association Vice-President of the CF Europe Association Patient Representative on the National CF Registry Committee Vice President, Greek Patient Association
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“The Benefits of Implementing Diagnostic and Therapeutic protocols in rare diseases“

Panagiota Mitrou, Internist-Diabetologist, Head of Independent Department of Therapeutic Protocols and Patient Registries, Ministry of Health
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“European Perspectives and divergent Greek Reality: “Please mind the gap””

Ioannis Margaros, PhD, Access & Value Demonstration Lead Greece/Cyprus/Malta, TAKEDA
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