Jamie O’Hara
Mr. Jamie O’Hara is an industry economist by background, with expertise in practical and technical applications of the discipline across industries.
He has worked with a range of organisations across the public, private and third sectors, including EC and EU and numerous charitable organisations.
Glenn Pierce
Dr. Glenn Pierce currently serves on the WFH as VP Medical and WFH USA Board of Directors and NHF (US) Medical and Scientific Advisory Council. He is an Entrepreneur-in-residence at Third Rock Ventures, recently cofounded and is CMO at Ambys Medicines, andalso is a biotech consultant in the gene therapy and hematological areas.
Ekawat Suwantaroj
Ekawat Suwantaroj (45), Bangkok, Thailand
I was diagnosed with severe Hemophilia A when I was just four months old. I am a graphic designer and owner of a graphic design company in Bangkok. I have been a part of the Thai Hemophilia Society for 20 years. Currently, I am Vice President of the Thai Hemophilia Patient Club and Committee member of the National Hemophilia Foundation of Thailand. Moreover, I have been working with other chronic diseases to set-up patient groups such as the Thai Rare Disease Foundation. I have also joined several international workshops with the World Federation of Hemophilia (WFH) and I volunteer as a co-option committee of World Federation of Hemophilia (WFH).
Present:
– Co-option committee of World Federation of Hemophilia (WFH)
– Vice President of Thai Hemophilia Patient Club (THPC)
– Committee of National Hemophilia Foundation of Thailand
– Vice President of Healthy Forum (Chronic diseases group)
– Committee of Asean Hemophilia Networks (AHN)
Declan Noone
Declan Noone is the President of the European Haemophilia Consortium (EHC), he was elected in 2019. Mr Noone has extensive experience as a patient advocate at the national, European and international level. For eight years, he worked with the Irish Haemophilia Society (IHS) as Data and Public Policy Specialist. His main responsibilities included membership of the national tender board for the purchase of products for the treatment of haemophilia and other related conditions. He also worked on the area of hepatitis C and access to treatments. Before being elected President, he worked with the EHC as 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 and a member of its Educational Materials, Data and Demographics and Safety and Supply Committees. He has co-authored several papers on the quality of life in people with haemophilia, access to haemophilia care in Europe and WFH and EHC Monographs. Most recently, he published the results of a survey on the evolution of haemophilia treatment and care in Europe between 2009 and 2019. Declan has degrees in Medical Engineering and Health Economics.
Dawn Rotellini
Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, served as its Executive Director, and began their Family Camp. After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter. She has been with the National Hemophilia Foundation for 14 years and serves as Chief Operating Officer. Dawn serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. Dawn proudly chairs the Women and Girls with Bleeding Disorders and the Hemophilia Organization Twin Committees for WFH. She holds a Bachelor of Science from Montana State University in Bozeman.
Clive Smith
Clive has severe haemophilia A and is the current chair of The Haemophilia Society (UK). Clive is also a member of the board of directors of the World Federation of Hemophilia, chairing the youth committee. As well as this, Clive is a patient representative on the UK Rare Disease Framework Board.
Cesar Garrido – Chair
Cesar Garrido was born in Caracas, Venezuela. He has two sons, one of whom has hemophilia A, which was the impetus for him becoming a committed member of the bleeding disorders community—a commitment which began over two decades ago.
In 1996, Garrido became a member of the Venezuelan Association for Hemophilia (AVH). He has held a number of roles in that organization, including being a member of the Board of Directors and Treasurer and Project Manager. At the AVH, he has been key member of several endeavours, including the creation of new diagnostic laboratories in Venezuela, and campaigns for testing and diagnosis of people with hemophilia (PWH) in Venezuela and Latin America. He was also part of national programs which increased access to factor, developed outreach and identification campaigns, increased access to education, and set up regional medical workshops for PWH.
At the international level, Garrido was an Advisory Board member of the International Alliance Patient Organization (IAPO) and has been a member of HERO (Haemophilia Experiences, Results and Opportunities) since 2010. He was also a development manager for a strategic alliance of 27 countries from the Americas—called the Coalition of the Americas (CoA)— that was set up to influence public policies.
The WFH has been a big part of Cesar Garrido’s life since 1999. He was a member of the Board of Directors from 2002 to 2010 and was most recently lay member from 2014 until his election as President in 2020. He has held a number of important roles at the WFH, including chair of the Accreditation Committee, chair of the Hemophilia Organization Twinnings (HOT) Committee, co-chair of Capacity Building Committee, national member organization (NMO) Vice President, and member of the President’s Strategic Council.
Brian O’Mahony
Brian O’Mahony is Chief Executive of the Irish Haemophilia Society. He represents the society on the statutory National Haemophilia Council, the statutory Hepatitis C Consultative Council and he is the Vice Chair of the Tender Commission established by the Irish Government for the Procurement of Factor Concentrates and haemophilia medications. He is a member of the Board of the Irish Blood Transfusion Service. He previously served as Chair of the Irish Haemophilia Society for 17 years from 1987 to 2003. He served as President of the European Haemophilia Consortium (EHC) for 8 years from 2011 to 2019 and as President of the World Federation of Hemophilia (WFH) for 10 years from 1994 to 2004. He is currently a member of the Coagulation Product Safety Supply and Access (CPSSA) committee of the WFH and of the Medical and Scientific Advisory Group (MASAG) of the EHC.
His publications for WFH include Monographs on Advocacy, Developing Haemophilia Organisations, Economics and Health Technology Assessments and A Guidebook on National Tender Systems. He is the author or co-author of more than 60 peer reviewed journal articles, and he is an ad-hoc reviewer for the journal Haemophilia. He is a Fellow of the Academy of Clinical Science and Laboratory Medicine (Ireland) and a Fellow of the Institute of Biomedical Sciences (UK). He has post graduate qualifications in Management and in Occupational Health and Safety and is currently an assistant adjunct Professor in Health Service Management in Trinity College, Dublin.
Brian O’Mahony has severe Haemophilia B.
Bradley Rayner
Bradley Rayner is a volunteer of the South African Haemophilia Foundation for more than 3 decades. He presided as the National Chairperson of SAHF for several years and currently has the portfolio of programmes. He participates in various international programs and advocacy groups. Bradley has developed training modules for Youth and NMO development. As a volunteer of WFH, he has been an invited speaker and chair at various congress’s and provided NMO training on Strategic Planning at the Glasgow GNMOT as well as various countries in MEA. Bradley Rayner received the 2022 WFH International Frank Schnabel Volunteer Award. Bradley is a person with Haemophilia A.
Bernadette Cappello
Bernadette Cappello is a Technical Officer in the Essential Medicines team at the World Health Organization in Geneva. She is a pharmacist with a master’s degree in public health and has expertise in medicines evaluation and health technology assessment in national and international settings. Prior to joining WHO, she was Director of the Pharmaceutical Benefits Advisory Committee Secretariat in the Australian Government’s Department of Health.
