History

Download the presentations from previous International Conference on Rare Diseases.

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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