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International Conference on Rare Diseases 2021

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Emmanuel Roilides

Professor of Pediatrics


Deputy Minister for Research and Innovation, Ministry of Development and Investments, Greece

Daria Julkowska

Coordinator of the European Joint Programme on Rare Diseases

Evanthia Orfanou

President of the Association of Cancer Patients & Rare Diseases of the Prefecture of Evros

Manolis Papasavvas

BoD President and Hospital Manager, Children's Hospital "Agia Sofia”, Athens

Panagiota Mitrou

Internist-Diabetologist, Head of Independent Department of Therapeutic Protocols

Leonidas Stefanis

MD, PhD, Professor of Neurology, National and Kapodistrian University of Athens

Ines Hernando

Director of European Reference Networks and Healthcare, EURORDIS

persephone augoustides-savvopoulou

MD, PhD, Emeritus Professor, Medical School, Aristotle University of Thessaloniki

Andrea Corazza

Head of Brussels Liaison Office, Public Policy & Government Affairs, Biogen

Elizabeth Vroom

Chair, World Duchenne Organization, Directeur, Duchenne Parent Project Nederland, Board Member, EURORDIS

Gulcin Gumus

Research and Policy Project Manager, EURORDIS

Claudia Gamon

MEP (RE, AU), Member ITRE

Georgia Moraiti

MSc, Social Worker, MDA Hellas


MD, PhD, MRCPCH, FRCPCH, Consultant Paediatrician

Dimitrios Synodinos

Professor of Genetics, National Kapodistrian University of Athens

Lauren Roberts

Director of Support, Genetic Alliance UK/ SWAN UK

Elina Miaouli

Vice President, “95” Rare Alliance Greece, Rare Disease Patient Advocate

Nathalie Moll

Director General, European Federation of Pharmaceutical Industries and Associations (EFPIA)

Thanasis Kontogeorgis

Secretary General for Coordination, Presidency of the Hellenic Government

Tomislav Sokol

MEP, EPP Group in the European Parliament


President “95” Rare Alliance Greece

Dimitrios Papadimoulis

Vice President, European Parliament

Vasileios Karatzias

President, Hellenic Friedreich’s Ataxia Association


EMA Pediatric Committee, EPF, WDO, EAE Board Member

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95, Rare Alliance Greece

Empowering the Rare Disease Patients


Better Health, Brighter Future

Alexion Pharmaceuticals

Our passion drives us to continuously innovate. Learn more…


Our mission is clear: we are pioneers in neuroscience

Chiesi Hellas

Patients are the beginning and the end of our journey!

Novartis Gene Therapies Switzerland GmbH

BREAKING BARRIERS to reimagine the treatment of rare, genetic diseases.


Doing now what the patients need next


We invest in innovation that opens up new therapeutic pathways

CSL Behring Hellas

Focus on Serious & Rare Diseases

Innovis Pharma

Greek pharmaceutical company


Στον αγώνα κατά του COVID-19 με όλες μας τις δυνάμεις