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.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
