History
Download the presentations from previous International Conference on Rare Diseases.
International Conference on Rare Diseases
The conference was successfully organized on February 29th in Athens and online on March 1st, 2024, with the physical presence of 31 and the online presence of 32 distinguished Greek and foreign speakers, and more than 380 participants from 15 countries around the world in the context of the World Rare Diseases Day by the Rare Diseases Greece (RDG), member of EURORDIS – Rare Diseases Europe and BOUSSIAS Events. 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 major international and Greek organizations, attracting the interest of the international community.
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Important speakers contributed to the success of the proceedings. Among others, 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, Nikos Milapidis, Secretary General for Social Security, Ministry of Labor and Social Security, Pavlina Karasiotou, Secretary General for Fiscal Policy, Ministry of Economy and Finance, Lilian Venetia Vildiridis, Secretary General of Health Services, Hellenic Ministry of Health, while among important speakers were Stelios Kympouropoulos, Psychiatrist, MEP, Evangelos Manolopoulos, President of the National Organization for Medicines (EOF), Professor of Pharmacology, School of Medicine, Democritus University of Thrace, Dr. Nandia Gogozotou, NE President at EOPYY, President of the Drug Price Negotiation Committee and Dr. Pantelis Messaropoulos, President of the Board of Directors of the Hellenic Institute of DRG (KE.T.E.K.N.Y.). The participation of very important international speakers provided a very thorough international perspective of the ongoing projects and issues pertaining to the rare diseases landscape. Amongst them: Steffen Thirstrup, Chief Medical Officer of EMA, Affiliate Professor at the University of Copenhagen, former Head of Division for Medicines Assessment and Clinical Trials at the Danish Health and Medicines Authority, former CHMP EMA Member, Violeta Stoyanova-Beninska, Chair of Committee for Orphan Medicinal Products at European Medicines Agency (EMA), Division Europe and International Affairs at MEB, Vice Chair of Regulatory Science Committee of IRDiRC, Magda Chlebus, Executive Director Science Policy and Regulatory Affairs, EFPIA, Dr. Patrice Verpillat, Head of Real World Evidence (TDA-RWE), Data Analytics and Methods Task Force (TDA), European Medicines Agency (EMA), Stanislav Kniazkov, Technical Officer, Medical Product Regulation, WHO Europe, Anja Schiel, Special Adviser, Lead Methodologist in Regulatory and Pharmacoeconomic Statistics, Norwegian Medical Products Agency (NoMA), Valentina Bottarelli, Public Affairs Director & Head of European Advocacy, EURORDIS-Rare Diseases Europe and Maurizio Scarpa, Paediatrician, Professor of Paediatrics, Dept. of Women’s and Children’s Health, University of Padova, Italy Director, Coordinating Center for Rare Diseases, Azienda Sanitaria Universitaria Friuli Centrale, Udine, Italy, Founder and President of Brains for Brain Foundation, ERICA Board/ MetabERN Coordinator.
The President of the RDG Dimitrios Athanasiou stressed the need for the State and stakeholders to set Rare Diseases as a National Priority and to contribute to the efforts made in Europe for the creation of the European Action Plan. With Rare Diseases affecting up to 5% – 7% of the population, i.e., more than 500,000 families, it is important to sign and activate the National Registry of Rare Diseases immediately, but also to renew and eventually implement the corresponding National Action Plan within 2024. A holistic approach to RDs in our country is needed for prevention, equal access to treatments, actions for holistic support for patients and their families, as well as public awareness campaigns to eliminate stigma towards rare patients.
3rd International Conference on Rare Diseases
2nd International Conference on Rare Diseases
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.
1st International Conference on Rare Diseases
The proceedings of the 1st International Conference on Rare Diseases that took place March 1-2 online following the International Rare Diseases Day were crowned with great success. The conference was co-organized by “95”, Hellenic Alliance Greece and Heath Daily of Bousias under the auspices of H.E. the President of the Hellenic Republic, Mrs. Katerina Sakellaropoulou. More than 50 distinguished international and Greek speakers were hosted for the first time in a Greek environment, conveying the latest developments, the Rare Diseases strategy and important new data for research, new innovative therapies and policies promoted at European level for rare diseases, giving rise to further dialogue and analysis of local needs.
The conference was attended by more than 650 participants from 37 countries (Europe, America, Asia and Latin America), while according to statistics most of the participants were from the patient and academic community, health scientists and researchers.
For the first time, an attempt was made to capture the entire journey of Rare Patients from Diagnosis to Access to the treatments and care they need. The aim of these two days was, through the exchange of knowledge, ideas and suggestions, to discuss appropriate practices and policies that will help health systems better meet the needs of the 30 million people living with a Rare Disease in Europe.