History

Download the presentations from previous International Conference on Rare Diseases.

2022

2nd International Conference on Rare Diseases

Balance between Equality and Sustainability

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.


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2021

1st International Conference on Rare Diseases

Building a Pathway from Diagnosis to Access

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.

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