A strong European voice for Cystic Fibrosis

We are very pleased to announce that as of January 2025, the President of the Panhellenic Cystic Fibrosis Association, Anna Spinou, has officially joined ERN-LUNG (European Reference Network for Rare Respiratory Diseases), assuming the role of volunteer patient representative (ePAG – European Patient Advocacy Groups), representing Greece and the Cystic Fibrosis community in Europe.

Joining ERN-LUNG is another important step in the European action of our Association, strengthening the voice of patients in one of the most decisive institutions for rare respiratory diseases.

On 20-21 March 2025, our President participated with a speech at the 9th Annual ERN-LUNG Congress, held in Paris, at the historic Hôpital Bicêtre hospital, in the context of the ePAGs patient representatives’ speeches. He presented the actions of our Association that have improved the lives of patients in Greece and highlighted the challenges of our community. At the same time, in her speech she also presented the work of the Austrian Cystic Fibrosis community, at the request of ePAG Elisabeth Jodlbauer-Riegler, who was unable to attend.

This dual representation was an honour, but also an opportunity to highlight the initiatives that have brought substantial changes in the quality of life of patients with Cystic Fibrosis, through innovative actions, health policy interventions and strengthening the voice of patients. The audience responded enthusiastically, expressing great interest, and several participants approached her afterwards to learn more about our work in Greece. The conference brought together representatives from networks, committees, patient organisations and partner organisations from all over Europe, with the aim of sharing knowledge and developing a common strategy. It was a dynamic opportunity for networking and highlighting Greek data, strengthening the voice of our country in the European dialogue on rare diseases.

Then, on 2-3 April 2025, Anna Spinou participated in the established meeting of the Board of Directors of EURORDIS – Rare Diseases Europe, also in Paris, continuing her second consecutive term as a Board Member of the leading organisation for rare diseases in Europe. EURORDIS, as the organisation that supports and coordinates patient representatives (ePAGs) across the European Reference Networks, plays a fundamental role in planning and coordinating patient participation in ERN-LUNG.

In a statement, Anna Spinou said:

“Cystic fibrosis patients, like any person with a rare disease, are not just numbers or statistics. We are persons with dreams and needs, fighting every day for quality of life and dignity.  The active participation of patient representatives in the European Reference Centres is crucial. It enables us to bring the authentic patient voice to the centre of decision-making.  Only through the cooperation of patients, health professionals and competent bodies can we shape a better and fairer future for all. My participation in ERN-LUNG and the continuation of my term on the EURORDIS Board is an opportunity for the voice of patients from Greece to be heard more loudly. To demand equal care, access to treatments and above all to remind that the disease does not define us – we define our future!”

Through these roles at European level, we continue to:
We strengthen access to European know-how.
We cooperate with other European associations.
We are strengthening the voice of patients in Greece.
We highlight the needs of people with Cystic Fibrosis at European level.
We are actively involved in shaping health policies.
We create synergies and actions with international impact.

What is ERN-LUNG?
ERN-LUNG is one of the official European Reference Networks (ERNs), bringing together specialised medical centres and scientists from across Europe to improve care for rare respiratory diseases such as Cystic Fibrosis. At the heart of ERN-LUNG are also patient representatives (ePAGs), who are equally involved in decision making and continuous improvement of health services. More: https://ern-lung.eu/about-ern-lung/patient-groups/ and https://ern-lung.eu/

What is EURORDIS?
EURORDIS – Rare Diseases Europe is the pan-European alliance of rare disease patient organisations, representing over 1,000 patient organisations from 74 countries. Its aim is to promote equal access to care, support research and empower patients. It is a key partner of the European Union in health policy making and is responsible for training and supporting patient representatives in European Reference Networks (ERNs) such as ERN-LUNG. More: https://www.eurordis.org

Here are photos and highlights from our President’s European participations in Paris!