Declan Noone is the President of the European Haemophilia Consortium (EHC). He was elected in 2019. Declan has extensive experience as a patient advocate both at the national, European and international level. He worked with the Irish Haemophilia Society (IHS) as Data and Public Policy Specialist for eight years. His main responsibilities included membership of the national tender board to purchase products for the treatment of haemophilia and other related conditions. He also worked on the area of access to treatments for hepatitis C. Before being elected President. He worked with the EHC as a Project Consultant on the PARTNERS Programme, an initiative to raise access to treatment in countries with a low standard of treatment. During his time with EHC, he also coordinated projects on data collection and novel therapies.
Declan was also a member of the Board of Directors of the World Federation of Hemophilia (WFH) and a member of the WFH Educational Materials, Data and Demographics and Safety and Supply Committees. He has co-authored papers on the quality of life in people with haemophilia, access to haemophilia care in Europe and WFH and EHC Monographs.
He has degrees in Medical Engineering and Health Economics.