Juan Andrés Pereira de Souza
Juan Andrés Pereira de Souza is a 42-year-old person with severe haemophilia type A. He is a teacher and teacher-trainer of English in Uruguay, South America. He holds an MA in Teaching English as a Foreign Language and is finishing his master’s in Teaching Spanish as a Foreign Language. Apart from education, he is a Head of Department of Administration and Logistics at a state company in his country.
He started working as a volunteer for the Uruguayan Haemophilia Association (AHU) in 2010 and the next year he was appointed vice president. For the following 2 years, he acted as surrogate president and lead a project that took the AHU to the different regions of the country, holding medical and social workshops and gathering key data about the community. In 2017, he cofounded the youth group of the AHU.
The following year, he was a delegate for the AHU in the WFH World Congress held in Glasgow. This event gave him the opportunity to broaden his knowledge about haemophilia worldwide, meet and share experiences with other NMO leaders and understand the realities and challenges faced by others. He is still in touch with many of them, a connection which has been enriching and fundamental for him.
In 2020, he was invited to join the Coalition of the Americas in the role of Coordinator of Education. The challenge imposed by the pandemic that year, implied that all training sessions had to be done virtually. His background in education and IT gave him the necessary strategies to coordinate and supervise online courses, interviews, and workshops, which are meant to empower leaders and other volunteers of the American continent.
Last year, he was elected Secretary of the AHU for the period 2021-2023 and he still acts as mentor of the Youth Committee, which has served as a source of generational change in the main board of the AHU. He was also chosen for the first cohort of the PACT Academy, a course that has given him further insight into advocacy strategies and the relationships with stakeholders and HTA agencies.
In his private life, Andrés is an avid reader and traveller and likes to spend his free time with his two dogs.
Johnny Mahlangu
Johnny Mahlangu is a Professor in Haematology and Head of School of Pathology in the Faculty of Health Sciences of the University of the Witwatersrand and the National Health Laboratory Service. He is also a Consultant Clinical Haematologist in Charge of the Haematology at the Charlotte Maxeke Johannesburg Academic Hospital and Director of the International Haemophilia Training Centre in Johannesburg. Johnny received his undergraduate and postgraduate training in science and medicine at the University of the Witwatersrand with haematology specialist and clinical haematology sub-specialist qualifications through the Colleges of Medicine of South Africa. He has published manyand presented over 500 abstracts, plenaries and key-note addresses at national and international meetings. His main area of research is novel therapies in bleeding disorders in which he has served as Principal Investigator for many international multicentre studies. Prof Mahlangu is current President of the College of Pathologists in South Africa, Chair of the South African Medical Research Council Board and Chair of the International Society on Haemostasis and thrombosis scientific and standardization Committee on Factor VIII, FIX and rare bleeding disorders.
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.
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.
