The Panhellenic Cystic Fibrosis Association actively participated in the EURORDIS Membership Meeting- EMM 2025, the established annual event of EURORDIS- Rare Diseases Europe, which is a meeting point for members of the European rare disease community. The event took place on 22-24 May 2025, in Riga, Latvia.
The Association was represented by Anna Spinou, President of the Panhellenic Cystic Fibrosis Association and Member of the Board of Directors of EURORDIS.
The two-day event was an essential opportunity for the European rare disease community to meet in person, exchange experiences, develop partnerships, strengthen advocacy skills and strengthen the voice of patients at the European level. More than 200 representatives of patient associations, patients and organisations from all over Europe participated.
The central theme of the event was to maximize the impact and strengthen the voice of patients with rare diseases in decision-making, aiming at their effective participation in political processes, both at national and European level.
The programme included interactive workshops designed to provide practical tools and know-how to the participating members to strengthen their role in defending patients’ rights.
During the proceedings, on Friday 23 and Saturday 24 May, topics such as:
- strategies to influence rare disease policy making at national and European level,
- the active involvement of patients and volunteers in the life cycle of medicines and health care,
- using data, such as the results of the Rare Barometer, to support evidence-based policy interventions.
The first day of the event, Thursday 22 May, was dedicated to mental health. The relevant workshop focused on empowering patient association representatives, providing practical tools and good practices for psychological support for people living with rare or undiagnosed conditions.
The participation of our Association contributed to highlighting the challenges faced by patients with Cystic Fibrosis in Greece and to strengthening the European dialogue for equitable and timely access to care, innovation and treatments.
The presence of the President of our Association, Anna Spinou, as a Member of the Board of Directors of EURORDIS, strengthened the institutional voice of the Greek community of rare diseases in this European forum.
Parallel International Evolution – Landmark Decision by WHO
On 24 May 2025, the same day as the end of the EMM, a historic decision was announced by the World Health Organization (WHO). The World Health Assembly (WHA) adopted a Rare Disease Resolution for the first time in its history, officially placing rare diseases on the global public health agenda. The resolution:
- It recognises the 300 million people living with a rare or undiagnosed condition as a global health priority,
- It reaffirms the responsibility of states to ensure Universal Health Coverage (UHC),
- It reinforces the need for equitable, inclusive, people-centred health systems.
EURORDIS and the international rare disease community welcomed this decision as an important step towards health equity and universal access to care.
More about the work of EMM 2025 on the EURORDIS website: https://www.eurordis.org/reflections-from-emm-2025/ and https://www.eurordis.org/eurordis-membership-meeting-emm-2025/
