The President of the Hellenic Cystic Fibrosis Association and Board Member of the Rare Patients Association of Greece, Anna Spinou, was elected as a new Board Member of the European Rare Diseases Association Eurordis-Rare Diseases Europe in the elections held on 17-19 May 2023.

This is the first time that a Cystic Fibrosis patient from Greece has been elected to the Board of Directors of Eurordis and this election gives Greece the opportunity to be at the centre of the demands for rare patients.

“With the National Action Plan for Rare Diseases in our country underway, it is important to ensure that Greek patients suffering from rare diseases have the same opportunities and possibilities as other patients in the European Union. With the experience of the entire Eurordis Board, new and old members, including remarkable representatives, patients and parents from different countries with different rare diseases, we are ready to face the new challenges. With perseverance and united as one big family, we will continue to fight for the elimination of any inequality and the improvement of the quality of life of rare patients across Europe”, said Anna Spinou, expressing her satisfaction for her election as Greece’s representative to Eurordis Rare Diseases.

* Anna Spinou was diagnosed with Cystic Fibrosis at the age of 6 months as an infant and from a young age she started volunteering to defend the rights of Cystic Fibrosis patients and rare patients. Although for over 4 years she was in end-stage respiratory failure with the risk of losing her life, she never stopped fighting for patients’ rights, proving that the rare patient can achieve the impossible if they fight with all their heart, stubbornness and hard work collectively through the team. Anna Spinou has been receiving the revolutionary treatment that “freezes” Cystic Fibrosis for the last few years and having regained her lost breath, she continues tirelessly to fight for a better quality of life for rare patients.

Good tenure to our President!

See all Eurordis Board Members here.