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