Anna Spinou was elected to the Eurordis Board of Directors in 2023 and she is the President of the Hellenic Cystic Association and Board Member of Rare Diseases Greece.
She is a 41 years old proud CF survivor, who lives in Athens in Greece with her husband and their two cats. She has graduated from the Business Administration Department of Athens University of Economics & Business and has been working for 15 years at University Hospital Administration.
Anna was diagnosed with CF at the age of 6 months, while she has a younger brother who suffers from CF too. Her father was one of the founders of the Hellenic Cystic Fibrosis Association (HCFA) established in Greece in 1983. She always had a strong sense of responsibility and as she was getting older with her brother, she realized that she had to continue the fight of her father. She and her brother started volunteering from an early age through the Hellenic CF Association, resulting in her 12 years’ experience as a patient advocate.
She was elected to the Board of Directors of Hellenic Cystic Fibrosis Association in 2003-2005, as the General Secretary in 2015-2017 and since 2018 she is the President of Hellenic Cystic Fibrosis Association. In 2017-2019 she was the General Secretary of the Hellenic Federation of Associations for Rare Diseases and since 2021 she is a Board Member of Rare Diseases Greece, advocating for rare patients. She participates in working groups and meetings of European Organizations: CF Europe, ELF, ERS, European Transplant Patient Organizations and Eurordis. She is also a Eupati trainee.
During her 12 years voluntary service as a patient advocate, she managed to improve the healthcare conditions in Greece, to contribute to the set up adult CF units and the patient registry in Greece, to improve access to care and medicines, to organise several programs and conferences for patients, to improve access to lung transplants and to raise public awareness for CF and rare diseases, proving that a rare patient association is able to positively transform the life of patients. During Anna’s Presidency, HCFA was awarded in 2020 for the start of the early access program to the life-saving miracle triple therapy for CF in Greece that saved patients’ lives and positively influenced the reimbursement negotiations in other countries.
Although she spent about 4 years being in a severe lung condition needing oxygen support 24 hours a day, she never gave up fighting for patients’ rights. Since 2020, when she started the miracle CF therapy, which totally changed her life, she continues with more strength her involvement in patient advocacy fighting for a better future and unlimited life for rare patients.
Anna loves swimming, theater, traveling and adores her two cats.