FACILITATE at the Rare Disease Day
On 1 March 2023, Prof. Dr. Johanna Blom has been invited to present FACILITATE project and its challenges at the 3rd International Conference on Rare Diseases: Greek Chapter, 2023, Athens in the Session “Flash Updates of RD Flagship Initiatives”
The conference focused on the theme: “Leveraging momentum for a comprehensive rare disease strategy”, with the goal to raise awareness and promote policies aimed at improving the “Diagnostic Odyssey”, treatment and equal access of rare patients to quality health services.
The central themes of FACILITATE – the return of clinical trial data to the patient and the secondary use of these data in an ethical ecosystem – fully integrate with highly topical issues discussed at conference, such as:
- Policy Landscape on Rare Diseases
- Regulatory Ecosystem Evolution, Research
- Clinical Trials as part of the care
- Patient Data and RWE
- Supporting Education for Patients and Healthcare Professionals
The Conference was under the auspices of the European Organization for Rare Diseases (EURORDIS – Rare Diseases Europe), while it has been held with the support of the Hellenic Ministry of Health, the European Federation of Pharmaceutical Industries and Associations (EFPIA), the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE), the Greek Patients’ Association (EAE), Greek Branch of the European Patients’ Academy (EUPATI Greece), the Institute of Pharmaceutical Research and Technology (IFET), the Hellenic Association of Pharmaceutical Companies (SFEE) and the PhRMA Innovation Forum (PIF).