Mr Declan Noone has been elected as EHC President during the EHC 2019 General Assembly.

On Friday 4 October, the General Assembly of the European Haemophilia Consortium (EHC) elected a new President, Mr Declan Noone. He replaces Mr Brian O’Mahony, who served for eight years as EHC President and 12 years as Steering Committee member.

For this week, EHC Now! we give you a farewell message from Brian O’Mahony and a thank you message from Declan to the community.

We spoke to Declan during the EHC 2019 Conference, shortly after his election, and he gave us the following statement:

“I would like to thank the community for this incredible honour of becoming EHC President. In the last thirty years, I saw as an NMO member at first and subsequently as a volunteer and staff member, the community growing and strengthening in terms of their advocacy efforts. I am now so honoured that the community has given me their confidence in leading them into the next four years. This weekend has been a whirlwind. I have had the opportunity to meet with a lot of EHC members and learn about their priorities, and I was delighted to see their hope for a better future. I want to help each NMO in becoming their best advocates and getting access to the treatment they deserve.

I also wish to thank Brian O’Mahony for the work he has done in the past eight years. I’ve had the pleasure to work with Brian for over a decade, and I greatly admire his leadership, vision and commitment towards the community. I know that I am stepping in big shoes and that the bar has been raised in terms of what the community will expect from their president, and I want to assure them that I am feeling ready to take on this challenge.

As I said in my candidature speech, I want to serve all communities such people with inhibitors, ageing patients, women with bleeding disorders and any patient in need of help in getting access to the treatment and care they deserve for a better quality of life.

Mr Declan Noone is the former EHC PARTNERS programme consultant. He held this position since 2016 and until September 2019. Prior to this, Declan worked at the Irish Haemophilia Society (IHS), when he was also a member of the Irish Haemophilia Product Selection Monitoring Advisory Board (HPSMAB). This body was in charge of product selection used in Ireland to treat haemophilia and other rare bleeding disorders. He also worked in the area of hepatitis C and access to treatment.

Declan was a member of the World Federation of Hemophilia (WFH) and sat on several committees such as the Educational Materials Committee, the Data and Demographics Committee and the Safety and Supply Committee.

Declan co-authored papers on the quality of life in people with haemophilia. He also worked on surveys on access to haemophilia care and procurement methods in Europe. He was an author of the WFH Monograph entitled “An Introduction to Key Concepts in Health Economics for Haemophilia.” Recently he published on European procurement methods. Mr Noone has an M.Eng, in the Medical Mechanical Engineering and an M.Sc in Health Economics.