Carisi Polanczyk
Dr. Polanczyk is a Cardiologist, Professor of Medicine and Coordinator of the National Institute for Health Technology Assessment/CNPq in Brazil. She graduated in Medicine from the Federal University of Rio Grande do Sul and completed a research fellowship in clinical effectiveness and health economic analysis at Harvard University, USA. Dr. Polanczyk has been appointed as Professor of the Graduate Programs in Epidemiology and Cardiology at UFRGS.
Prior experience includes chief of Clinical Research Center of Hospital de Clinicas de Porto Alegre, Coordinator of the Master-degree Program in Health Technology Management, and consultant for the Brazilian Health Ministry – Department of Health Care/ High complexity and ANVISA in supporting Health Technology Assessment issues. Currently, she is the Chief of Cardiology at Hospital Moinhos de Vento, and ahead of Heart Failure Standard Set implementation since 2017.
Her clinical areas of interest include clinical effectiveness, quality of healthcare and health economic analysis with a focus on cardiovascular disease. In the last years, she has expanded her ideas to outcomes measurement, longitudinal assessment of patients with cardiovascular disease; looking at opportunities to increase value and innovate in healthcare delivery.
David Page
David Page is Director of Health Policy for the Canadian Hemophilia Society (CHS). His principal role is to advocate for access to optimal comprehensive care and the most efficacious coagulation therapies in Canada. He served as a volunteer with the CHS from 1982 to 2001, including a 2-year term as President in the 1990s. In 2001, he left the field of teaching and educational publishing to take a staff position with the CHS. He was National Executive Director from 2006 to 2017. David served on the Quebec Hemovigilance Committee advising the Minister of Health on blood safety issues from 1998 to 2006, including four years as president. He has been a member of the Héma-Québec (Quebec’s blood establishment) Safety Committee since 1999 and is now its chairperson. David served on the Executive Committee of the World Federation of Hemophilia from 2000 to 2008 and was chair of its Coagulation Products Safety, Supply and Access Committee from 2001 to 2016. David has severe factor IX deficiency.
Lieven Annemans
Lieven Annemans is Senior Full Professor of Economics of Health and Wellbeing at the Faculty of medicine and health sciences at Ghent University, Belgium. He is Past-President of ISPOR (the International Society of PharmacoEconomics and Outcomes Research), was during 8 years chairman of the Flemish health council, and is currently chairman of the Flemish Committee for Societal Revival. He conducts research on how to optimize the health of the population since more than 25 years, specialising in Health Technology Assessment (HTA), financial incentives for clinicians, and the cost-effectiveness of health promotion. Since 6 years he also conducts research on wellbeing and happiness among the general population and among patients. He is (co-) author of > 320 scientific papers in peer-reviewed journals and published several books, among which ‘Health economics for non-economists’ (Pelckmans Pro, 2018)
Kate Khair
Dr Kate Khair is: Director of Research at Haemnet, a Clinical Academic Careers Fellow, Centre for Outcomes Research and Experience in Children’s Health Illness and Disability (ORCHID) at Great Ormond Street Hospital for Children NHS Trust and Visiting Professor of Health and Social Care at London South Bank University. Since becoming a state registered nurse in 1981, Dr Khair has gained a number of other professional qualifications including state registration in paediatric nursing, a master’s degree in anthropology, a City and Guilds master’s degree in higher levels of practice, several modules in advanced nursing and a PhD in health. Kate is an advocate of the nurse’s role in the multi-disciplinary team, is the chair of the nurses committee of the WFH, a founding Trustee of Haemnet a haemophilia education and research charity where she is now Director of Research and is the Editor in Chief of the Journal of Haemophilia Practice. Dr Khair worked in the haemophilia centre at Great Ormond Street Hospital for Children from 1991 as a consultant nurse. In 2018 she moved to ORCHID to use her academic time to continue her work into outcomes research in haemophilia and bleeding disorders as well as to support PhD students in health outcomes research.
Dejan Petrovic
Dejan Petrovic, President of the Board of the Serbian Haemophilia Society
Dejan Petrovic has been the President of the Board of the Serbian Haemophilia Society (SHS) since December 2017. Prior to that, he was the Vice President of the Board, while he has been a member of the SHS since its establishment in 2000. During his activism in the SHS he has participated in numerous congresses, conferences, seminars, workshops in the country and abroad, and in the last few years his activities have focused on the procedure of public procurement of drugs for hemophilia, media activities and communication and negotiations with authorities. Through workshops, lectures and panel discussions, he transferred knowledge and experiences from the procedure of public procurement of drugs for hemophilia in the country and abroad, as well as experiences from advocating for patients’ rights and negotiation with authorities. He has been a long-term member of the Public Procurement Committee of Medicines for Hemophilia and the National Hemophilia Committee.
He is a lawyer, has been working as legal advisor with National Employment Service, married, the father of two and person with severe form of Hemophilia A.
Salome Mekhuzla
Salome Mekhuzla, WFH Director, Global Development leads a team responsible for implementing various healthcare development, capacity-building and advocacy programs around the globe. Originally from the country of Georgia, her prior experience while working with European and US-based international NGOs on civil society development, advocacy and inter-ethnic relations in the South Caucasus region serves her well in her current role. She holds a MSocSc degree in Transformation in South Caucasus from Tbilisi State University, Center for Social Sciences and a MSc in Nationalism Studies from the University of Edinburgh.
Miguel Crato
Miguel Crato SC-member EHC European Haemophilia Consortium Montijo, Portugal
Megan Adediran
Megan Adediran is a member of the WFH Board and is the Executive Director of the Haemophilia Foundation of Nigeria (HFN). Megan is a person with a bleeding disorder herself and has two sons with severe haemophilia A. Over the years, the HFN has been able to spearhead the advocacy and awareness of bleeding disorders in Nigeria and train healthcare providers across the country. She also advocated effectively for government engagement including securing a Desk Officer for bleeding disorders at the Federal Ministry of Health and 6 states in the country. Recently, she successfully got the government to include bleeding disorders in the National NCD policy. Megan has worked collaboratively with medical professionals to set up 15 HTCs across Nigeria and she and them are currently developing the second edition of its National Treatment Guideline.
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.
