February 28 (Hybrid) & March 1 (Digital), 2023 | Technopolis City of Athens Gasholder 1 – Auditorium “Miltiadis Evert
Leveraging the momentum for a comprehensive rare disease strategy
As a follow-up to this year’s World Rare Disease Day, organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias organized the 3rd International Conference on Rare Diseases : Greek Chapter at Technopolis City of Athens Gasholder 1 – Auditorium “Miltiadis Evert”, on February 28 (Hybrid) & March 1 (Digital), 2023 with the physical presence of 28 and the online presence of 40 distinguished Greek and foreign speakers, and more than 350 participants from 20 countries around the world . After last year’s success, the Conference, which was held under the auspices of EURORDIS – Rare Diseases Europe, gathered the interest of the international community this year by focusing on: “Leveraging the momentum for a comprehensive rare disease strategy”.
There is an urgent need for a national Strategy for Rare Diseases, with the creation of a National Action Plan and the National Registry of Rare Diseases, within 2023 in compliance with the European policy for Rare Diseases.
Data quality needs to be improved both at European and global level. There is a need to create Centers of Expertise for Rare Diseases and create policies for faster diagnosis, optimal treatment, and more effective patient monitoring. Advanced medicines (ATMPs) have transformative benefits and should be treated as investments in healthcare, not just costs. The above are some of the important conclusions reached by the distinguished Greek and foreign speakers who represented the political leadership as well as stakeholders at a global level.
The Conference was held under the patronage of the European Organization for Rare Diseases (EURORDIS – Rare Diseases Europe) and Rare Disease Day , while it was held with the support of the Hellenic Ministry of Health, the European Federation of Pharmaceutical Industries and Associations (EFPIA), the European Joint Programme on Rare Diseases (EJP RD), the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE), the Greek Patient Association (EAE), the Greek Branch of the European Patient Academy (EUPATI Greece), the Institute of Pharmaceutical Research and Technology (IΦET), the Hellenic Association of Pharmaceutical Companies (SFEE) and the PhRMA Innovation Forum (PIF).
Grand Sponsors were the companies: Alexion AstraZeneca Rare Disease and ROCHE
Sponsors, the companies: CHIESI, GENESIS and PTC Therapeutics
Supporters the companies: ARDIUS Pharma, INTEGRIS Pharma, IQVIA, PFIZER and TAKEDA Contributors the companies: ARITI and SPECIALTY Therapeutics.
Media Partner was PHOCUS, and Media Sponsors were “KATHIMERINI”, ATHENS 9,84, FDaily, HealthMarketing, HealthMore, Iatronet, News4health, and Onmed
About the Conference
Under the theme “Leveraging the momentum for a comprehensive rare disease strategy”, the 3rd International Conference on Rare Diseases aspires to stimulate dialogue and cooperation across all stakeholders – patient representatives, policymakers, clinicians, researchers, industry, payers and regulators – towards advancing a comprehensive rare disease strategy that promotes sustainability and equity within healthcare ecosystems.
Taking concrete actions and co-creating policy solutions that respond to the unmet needs of people living with rare diseases will lead to a better future for patients, their families and societies at large.
Utilizing the experience and knowledge of international partners, the conference will open the dialogue with the current political developments in Europe and the drawing up of a National Strategy for Rare Diseases with the ultimate goal of creating and implementing the National Action Plan for Rare Diseases within 2023.
Main Streams will focus on
- Policy Landscape on Rare Diseases
- Regulatory Ecosystem Evolution
- Initiatives Updates (SRIA EJPRD, S4C, ERICA, TOGETHER4RARE, TRANSFORM, MOONSHOT, and others)
- Prevention and Early Diagnosis: The Development of prenatal and neonatal screening programs
- Development and Integration of the European reference centers (ERNs) in the National Health System
- Research, Clinical Trials as part of the care
- Patient Data & RWE: Collection of valid and reliable information and the Rare Disease registry
- Strategic Planning for Rare Diseases in Greece
- RD Patients Registry and the Greek National Action Plan for Rare Diseases
- Supporting Education for Patients and Healthcare Professionals
Advisory Committee
- Diego ARDIGÓ, Head of Research & Development, Global Rare Diseases, Chiesi
- Thomas BOLS, Head of Government Affairs and Public Policy for EMEA & Asia Pacific Region, PTC Therapeutics
- Solange CORRIOL- ROHOU, Sr. Director of Regulatory Affairs & Policy for Europe, AstraZenecaNicolas GARNIER, Senior Director, Patient Advocacy Lead, Global Product Development, Pfizer Rare Disease
- Daria JULKOWSKA, EJP RD Coordinator, Assistant Director, Thematic Institute of Genetics, Genomics & Bioinformatics, INSERM, France
- Alexander NATZ, Secretary General, European Confederation of Pharmaceutical Entrepreneurs (EUCOPE)
- Giannis SOTIRIOU, CEO of the Institute of Pharmaceutical Research and Technology (IFET)
- Theofaneia TSACHALINA, Prof. of Physical Education, Exercise & Health Science, Diabetes Care, President of Association of Parents Children and Young Adults with Diabetes, Vice-President of Hellenic Diabetes Federation, General Secretary Rare Deseases Greece, Deputy Treasurer of Greek Patient Association
Confirmed Speakers
Confirmed Speakers
- Aris ANASTASAKIS, MD, PhD Cardiologist, Scientific Head of the Hereditary and Rare Cardiovascular Diseases Unit, Deputy Director of the Cardiology Department, Onassio Cardiac Surgery Center
- Eleni ANTONIOU, Senior International Affairs Officer, Thalassaemia International Federation (TIF)
- Kostas BAKOYANNIS, Mayor of Athens
- Thomas BOLS, Head of Government Affairs and Public Policy for EMEA & Asia Pacific Region, PTC Therapeutics
- Victoria HEDLEY, Rare Disease Policy Manager, Newcastle University, Institute of Translational and Clinical Research
- Hana HORKA, Policy Officer, European Commission, Directorate-General for Health and Food Safety Unit B3, European Reference Networks (ERNs)
- Christina KANAKA-GANTENBEIN, MD, PhD, FMH (CH) Professor of Pediatrics-Pediatric Endocrinology, Director First Department of Pediatrics and Head of the Center of Reference for Rare Pediatric Endocrine Disorders of the Medical School of the National and Kapodistrian University of Athens, “Aghia Sophia” Children’s Hospital, President of the Institute of Child Health Athens, Greece
- Alexandros SOTIRIADIS, Professor of Obstetrics -Gynaecology Fetomaternal Medicine, 2nd Department of Obstetrics – Gynaecology, Hippokrateion General Hospital, Aristotle University of Thessaloniki
- Georgios TSIVGOULIS, Professor & Chairman of Second Department of Neurology, School of Medicine, National & Kapodistrian University of Athens, “Attikon” University Hospital, Athens, Greece, President of the Hellenic Neurological Society
- Denise UMUHIRE, Pharmacoepidemiologist and RWE specialist, Data Analytics and Methods Taskforce, European Medicines Agency (EMA)
- Charalampos VLACHOPOULOS, Professor of Cardiology at Athens Medical School, A’ Cardiology Clinic of the University of Athens, ‘HIPPOCRATIO’ General Hospital of Athens
- Till VOIGTLAENDER, Assistant Professor, Institute of Neurology, Department of Neuropathology and Neurochemistry, MedUni Vienna
- Theoklis ZAOUTIS, President, National Public Health Organization (EODY), Professor of Pediatrics at the National and Kapodistrian University of Athens and Emeritus Professor of Epidemiology at the Perelman School of Medicine of the University of Pennsylvania and at the Children’s Hospital of Philadelphia (CHOP), Member of the Scientific University of Athens CDC) and Member of the Commission on Infectious Diseases (The Red Book Committee) of the American Academy of Education (AAP)
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 • Patient and Patient Representatives
Testimonials
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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. www.alexion.com
Throughout our 125-year history, Roche has grown into one of the world’s largest biotech companies, as well as a leading provider of in-vitro diagnostics and a global supplier of transformative innovative solutions across major disease areas. Our commitment to our people, partners, stakeholders and, most importantly, our patients remains as strong as it was on the first day of our journey.
Sponsors
Chiesi is an international, research-focused biopharmaceuticals group that develops and markets innovative therapeutic solutions in respiratory health, rare diseases, and specialty care. The company’s mission is to improve people’s quality of life and act responsibly towards both the community and the environment.
By changing its legal status to a Benefit Corporation in Italy, the US, and France, Chiesi’s commitment to create shared value for society as a whole is legally binding and central to company-wide decision-making. As a certified B Corp since 2019, we’re part of a global community of businesses that meet high standards of social and environmental impact. The company aims at becoming net-zero by 2035.
For further information please visit www.chiesi.com
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.
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.
Our mission is to provide access to best-in-class treatments for patients with little to no treatment options. For 25 years, we have been successful delivering on our mission by pursuing groundbreaking science and technology to bring multiple innovative therapies that are transforming patient’s lives, globally.
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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]
