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March 1-2, 2022 • Live on your screen

Following this year’s World Rare Diseases Day and with the online presence of 57 distinguished Greek and foreign speakers and more than 450 participants from 30 countries around the world, the two-day International Conference on Rare Diseases: Greek Chapter, organized for the 2nd year by the Association “95”, Hellenic Alliance for Rare Patients, BOUSSIAS and Health Daily, ended on Wednesday, March 2 with great success. Taking into account the recent United Nations Resolution, the main theme of this year’s Conference was “Balance between Equality and Sustainability”. The conference was held under the auspices of the European Parliament and EURORDIS – Rare Diseases Europe.

The government was represented by the Minister of Health Mr. Thanos Plevris, the Minister of Labor Mr. Kostis Hatzidakis, Ms. Mina Gaga, Deputy Minister of Health and Ms. Pavlina Karasiotou, Secretary General of Social Security, Ministry of Health and Ministry of Social Affairs. The European Parliament was represented by Mr. Dimitris Papadimoulis, Vice President of the European Parliament, Mr. Stelios Kympouropoulos, MEP-psychiatrist, Norbert Couspel, Chair, Future-Proofing Health Systems Committee, European Health Parliament, 7th edition, Tomislav Sokol, MEP, EPP Group in the European Parliament and Maria da Graça Carvalho, MEP. The main topic of discussion was the need to promote and protect the human rights of patients with Rare Diseases as well as the effective treatment of their problems – from diagnosis, care, research and innovation, to access to innovative drugs- which require education, coordination, participation and cooperation of all parties involved.

Gold Sponsor of the Conference was Takeda. Grand sponsors were Novartis Gene Therapies and Roche. Sponsors were Alexion, Chiesi, Genesis Pharma, IQVIA, Pfizer and PTC Therapeutics. Supporter was Ardius Pharma.




About the Conference

The conference aims to underscore the need to address the root causes of inequality and discrimination faced by persons living with a rare disease and their families. In this regard, it recognizes that there is a need for policies and programmes aimed at eliminating the root causes of discrimination and stigma in healthcare settings to ensure universal and equitable access to quality health services without financial hardship for all people with RD. In addition, the conference’s scope is to promote the need to foster innovation and the positive contribution that innovation can make in promoting social cohesion, reducing inequalities and expanding opportunities for all, including persons living with a rare disease, along with recognizing the need to support, streamline and increase attention on research in rare diseases.

As the EU shapes its future regulations, strategies and access policies, this conference will serve as an opportunity to press the ‘pause button’ and take the time to call upon all EU Member States to strengthen health systems, notably in terms of primary health care, in order to provide universal access to a wide range of health-care services that are safe, of quality, accessible, available and affordable, timely, and clinically and financially integrated.

This in turn will help to empower persons living with a rare disease in addressing their physical and mental health needs to realize their human rights, including their right to the highest attainable standard of physical and mental health, to enhance health equity and equality, end discrimination and stigma, eliminate gaps in coverage and create a more inclusive society.

By co-creating policy options today that can lead to a better patient journey in the future and towards engaging all stakeholders to take action, the 2nd International Conference on Rare Diseases aspires to bring together all stakeholders in the rare disease community – patient representatives, policymakers, clinicians, researchers, industry representatives, payers and regulators to exchange invaluable knowledge with the aim of enhancing dialogue and promoting a common action plan that will help balance equity and sustainability across all EU countries so as to unite them on the front of combatting rare diseases.


Main Streams will focus on


1 | Building a Sustainable Healthcare System based on equity, equality and patient rights

2 | European vs National RD Action Plans

3 | Advancing Policy Discussion on Prevention and Newborn Screening as Pillars of Public Health

4 | Data Wealth in Rare Diseases

5 | Thinking out of the box: Alternative Access and Funding Models for Rare Diseases

  • A. Transforming Access Models for RDs 
  • B. New Access Models for RD Medicines
  • C. New Funding Models for Access
  • D. New Funding Models for RD Drug Development

6 | Rare Disease as a National Priority in Greece 

Organizing Committee

Mary Adamopoulou, Chair of “95” Rare Alliance Greece, EUPATI, RARE ALLIANCE

Dimitrios Athanasiou, EMA Pediatric Committee, EPF, WDO, EAE Board Member, RARE ALLIANCE

Valentina Bottarelli, Public Affairs Director & Head of European and International Advocacy, EURORDIS

Daria Julkowska, EJP RD Coordinator, Assistant Director, Thematic Institute of Genetics, Genomics & Bioinformatics, INSERM, France

Advisory Committee

Diego Ardigò

Research & Development Head, Global Rare Diseases, CHIESI FARMACEUTICI S.p.A.

Walter Atzori

Senior Director Patient Advocacy International, ALEXION

Thomas Bols

Head of Government Affairs and Patient Advocacy, EMEA & APAC at PTC Therapeutics, Inc., PTC

Andrea Corazza

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

Alexander Natz

Director General, EUCOPE

Christos Dakas

Executive Director, Country Manager Greece, Cyprus & Malta, NOVARTIS Gene Therapies



Senior Policy Officer, Thalassaemia International Federation (TIF)


Member of the Board of Directors EURORDIS, EURORDIS EUROPLAN Advisor, Member of the Council of National Alliances

Dimitrios T. BOUMPAS

Professor of Pathology-Rheumatology, Medical School, National Kapodistrian University of Athens, President of the Central Health Council (KESY), President of the Medical Society of Athens, Director of the 4th Pathological Clinic, General University Hospital of Athens “ATTIKON“, Member of the Institute of Molecular Biology and Biotechnology, Heraklion Crete and Institute of Biomedical Research, Academy of Athens


Senior Vice President Market Access and Pricing, Alira Health


Chair, Future-Proofing Health Systems Committee, European Health Parliament, 7th edition


Executive Director, Thalassaemia International Federation (TIF)Φωτογραφία-κ.-Μίνας-Γκάγκα-black.jpg


Alternate Minister of Health, Ministry of Health, Greece


Acting Program Manager, Access to Medicines and Health Products, World Health Organization (WHO Europe), Co-ordinator ‘Innovation, Access and Use’, Essential Medicines and Health Products, World Health Organization


Senior Director, Patient Advocacy Lead, Global Product Development, Pfizer Rare Disease


Asst. Prof. of Paediatrics, Medical Faculty, University Medical Centre, University Children’s Hospital, Ljubljana, Slovenia, Member of Republic of Slovenia National Medical Ethics Committee, Visiting Scholar, Stanford University School of Medicine


General Manager of the Hellenic Association of Pharmaceutical Companies (SFEE)

Stanislav KNIAZKOV

Technical Officer, Medical Product Regulation at World Health Organization (WHO)


Public Health Policy Director – Rare2030 Project Lead, EURORDIS-Rare Diseases Europe


Inborn Errors of Metabolism, Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Newborn screening and Laboratory for metabolic disorders


Investment Officer, Growth Capital & Innovation Finance Unit, European Investment Bank (EIB)


Psychiatrist, Memember of the European Parliament

Nathalie MOLL

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

Alexander ΝΑΤΖ

Secretary General, European Confederation of Pharmaceutical Entrepreneurs (EUCOPE)


OCM Director – Regulatory Science Europe at Critical Path Institute (C-Path)


Scientific Administrator, Data Analytics and Methods Task Force, European Medicines Agency (EMA)
Dimitrios PAPADIMOULIS in the EP in Brussels


Vice President, European Parliament, Head of the SYRIZA delegation, Member of the European Parliament’s “Progressive Caucus“ steering committee


Minister of Health, Hellenic Ministry of Health
NovaQuest, Devin Rosenthal


Vice President NovaQuest Capital Management

Andrzej Jan RYS

Director for Health systems, medical products and innovation responsible for Directorate B in DG SANTE, European Commission


Managing Director of Vital Transformation




Committee for Orphan Medicinal Products (COMP) Chair, European Medicines Agency (EMA)


Head of Advanced Therapies Human, Medicines Division European Medicines Agency (EMA)


Associate Professor at Vilnius University, Faculty of Medicine, Head of Unit, Center for Medical Genetics, Vilnius University Hospital Santaros Clinics, National Coordinator, Orphanet International, Panel of Experts Member, WHO Collaborative Global Network for Rare Diseases, Diagnostics Scientific Committee Member, International Rare Diseases Research Consortium (IRDiRC)


Policy Officer, Unit B.3 – European Reference Networks and Digital Health, DG Health and Food Safety, European Commission

Athanassios VOZIKIS

Associate Professor, Director of The Laboratory of Health Economics and Management of University of Piraeus

Who should Attend?

Healthcare Stakeholders • Government representatives & officials • Pharmaceutical industry executives (Market Access, Government Affairs, Health Economics) • Public & Private Health services providers • Health economists • Health Policy Experts • Healthcare Professionals • Nurses • Academics • Researchers • Journalists


Organized by

Gold Sponsor

About Takeda Pharmaceutical Company

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discover and deliver life-transforming treatments, guided by our commitment to patients, our people and the planet. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Rare Genetic and Hematology, Neuroscience, and Gastroenterology (GI). We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines. We are focusing on developing highly innovative medicines that contribute to making a difference in people’s lives by advancing the frontier of new treatment options and leveraging our enhanced collaborative R&D engine and capabilities to create a robust, modality-diverse pipeline. Our employees are committed to improving quality of life for patients and to working with our partners in healthcare in approximately 80 countries. For more information,

Grand Sponsor

Novartis Gene Therapies, a Novartis company, is dedicated to developing and commercializing gene therapies for patients and families devastated by rare and life-threatening neurological genetic diseases. Founded in 2013 and headquartered in Bannockburn, IL, Novartis Gene Therapies pioneered foundational research, establishing AAV9 as an ideal vector for gene transfer in diseases affecting the central nervous system, laying the groundwork to build a best-in-class, transformational gene therapy pipeline. Novartis Gene Therapies’ initial gene therapy for spinal muscular atrophy (SMA) has been approved in many parts of the world including the U.S., Japan, Israel, EU and Brazil. Having provided treatment to more than 1.800 SMA patients worldwide, Novartis Gene Therapies is today one of the world’s leading gene therapy companies.

Founded in 1896 in Basel, Switzerland, as one of the first industrial manufacturers of branded medicines, 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. Founded in1896 in Basel, Switzerland, as one of the first industrial manufacturers of branded medicines, 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.


About Alexion

Alexion AstraZeneca Rare Disease is a global biopharmaceutical company focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and commercialization of life-changing medicines. We continue to deepen our understanding of rare disease, innovating and evolving into new areas where there is great unmet need and opportunity to help patients and families fully live their best lives. Alexion focuses its research efforts on novel molecules and targets in the complement cascade and its development efforts on hematology, nephrology, neurology, metabolic disorders, cardiology and ophthalmology. Headquartered in Boston, US, Alexion has offices around the globe and serves patients in more than 50 countries.

Chiesi is an international research-focused pharmaceuticals and healthcare group with over 85 years’ experience. Since 2019, Chiesi has been the world’s largest B Corp certified pharmaceutical group. B Corps are global leaders convinced to leverage business as a force for good.

The Group researches, develops and markets innovative therapeutic solutions in three focus areas: AIR, RARE, CARE.

In February, 2020 Chiesi launched Chiesi Global Rare Diseases, a new business unit focused on research, development and commercialization of treatments and patient support services for rare/ultra-rare disorders. We’re working to build a brighter future for patients. No patient should be left behind.

GENESIS Pharma was one of the first pharmaceutical companies in Europe to specialize in the promotion, 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.

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

Στη Pfizer έχουμε ως σκοπό να «Καινοτομούμε για να αλλάξουμε τις ζωές των ασθενών» και γι’ αυτό επενδύουμε διαρκώς στην εξέλιξη της επιστήμης, και της τεχνολογίας.

Η Pfizer Hellas ιδρύθηκε το 1960 και σήμερα απασχολεί 436 εργαζόμενους (Μάρτιος 2021). Έχει πιστοποιηθεί ως Great Place To Work, ενώ έχει αποσπάσει σημαντικές διακρίσεις για την Κοινωνική της προσφορά. Βασικό συστατικό της εταιρικής μας κουλτούρας αποτελεί η αποδοχή της διαφορετικότητας και η ισότιμη αντιμετώπιση όλων.

Η Pfizer επενδύει και στηρίζει έμπρακτα το ανθρώπινο δυναμικό και τα ταλέντα της χώρας ιδρύοντας στη Θεσσαλονίκη δυο παγκόσμια κέντρα: το Παγκόσμιο Κέντρο Ψηφιακής Tεχνολογίας (Global Digital and Technology Hub) και το Κέντρο Επιχειρησιακών Λειτουργιών και Υπηρεσιών.

PTC is a science-driven, global biopharmaceutical company focused on the discovery, development and commercialization of clinically differentiated medicines that provide benefits to patients with rare disorders. PTC’s ability to innovate to identify new therapies and to globally commercialize products is the foundation that drives investment in a robust and diversified pipeline of transformative medicines. PTC’s mission is to provide access to best-in-class treatments for patients who have little to no treatment options. PTC’s strategy is to leverage its strong scientific and clinical expertise and global commercial infrastructure to bring therapies to patients. To learn more about PTC, please visit us at and follow us on Instagram, Facebook, Twitter, and LinkedIn


Under the Patronage of

With the Support of

The Institute of Pharmaceutical Research and Technology is a subsidiary of the National Organization for Medicines. It mainly engages in the production, import and distribution of pharmaceutical products, which are not marketed in Greece by private pharmaceutical companies and are deemed indispensable for patient treatment and the protection of public health.

The Institute’s mission is to make healthcare available to all patients, by providing solutions that enable access to products, therapies, and technology. Its priority lies with patients, and the coverage of their needs in an integrated and responsible way, with respect to the applicable legislation, regulations, and international standards. For the past 30 years, the Institute has been focusing on the Greek patient, working consistently and persistently for the protection of Public Health, ensuring access to rare medicines and treatments, while offering top health services, innovating, and evolving.

International Media Partner

Media Partners

The Rare Disease and Orphan Drugs Journal (RDODJ) is an international, peer-reviewed, quarterly published online journal launched by OAE Publishing Inc. in April,2021. RDODJ will report on scientific advances in the genetics of rare diseases, the molecular basis of the pathologies, and translational research on diagnosis, prevention and treatment. The journal aims to provide a forum for scientific studies and discussion covering the important regulatory, socio-economic and human science issues related to rare diseases and orphan drugs.

Learn more at and follow us on Twitter.

Media Sponsors

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CONEQ provides technical equipment and services to any kind of event. With our Simultaneous Interpretation Systems, Conference Systems, AudioVisual Equipment we support events and provide the best service to our customers. Our professionalism, our high quality of service and state of the art equipment offered to over 600 large and of great significance conferences during the last 5 years have certainly contributed to our constant uptrend. Call us at (+30) 211 2163453. or email us at [email protected]

Contact us

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Greece: Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]
Cyprus: Giorgos Loizou, Τ: +357 99 103323, E: [email protected]
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