Renchi Yang
Dr. Renchi Yang is Professor and Head of Thrombosis and Hemostasis Center at Institute of Haematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences (CAMS) and Peking Union Medical College (PUMC). Dr. Yang contributes extensively to clinical research and is involved in many clinical trials. He has published over 100 peer-reviewed publications and book chapters on bleeding disorders. He is Steer Committee member of East Asia Hemophilia Forum and the Association for Hemophilia and Allied Disorders-Asia-Pacific (AHAD-AP). He is Vice Chairman of the Thrombosis and Hemostasis Society, China Medicine Education Association. He is also Standing Committee member of the Rare Diseases Society, Chinese Research Hospital Association. He is Chairman of Hemophilia Committee, China Alliance for Rare Diseases. He is Director of the National Hemophilia Registry Center, Chairman of the Hemophilia Treatment Center Collaborative Network of China, Chairman of National Hemophilia Cooperative Group. He is currently the translated edition (Chinese) editor of Haemophilia, the official journal of the World Federation of Hemophilia (WFH).
Davide Matino
Dr. Davide Matino is an Assistant Professor of Medicine at McMaster University in Hamilton, Ontario, Canada. Dr. Matino obtained his medical degree at the University of Perugia and completed his residency training at the University of Rome “Tor Vergata”. He completed his Clinical Fellowship in Bleeding disorders at McMaster University where he also received his MSc in Health Research Methodology. Prior to joining faculty at McMaster University in 2020 he was working at the University of Perugia as Assistant Professor in the Department of Experimental Medicine, leading a research project focused on the study of the immune response to FVIII in hemophilia, funded by the Italian Ministry of Health. He is actively engaged in the care of patients with bleeding and thrombotic disorders and contributes to education in the field of bleeding disorders locally, nationally and internationally. He is an active clinical trial investigator involved in numerous trials in the field of thrombosis and haemostasis with a specific focus on novel therapies for hemophilia. Dr Matino also directs a basic research lab investigating coagulation factor VIII and factor IX and the molecular mechanisms of hemophilia A and B. His work has received several awards and has been presented both nationally and internationally at the International Society for Thrombosis and Haemostasis, American Society of Hematology, and other scientific meetings.
Alexandra Robledo
Alexandra Robledo is the president of the Bogotá Chapter of the Colombian League of Hemophilia and other Bleeding Disorders. She is a symptomatic Hemophilia A Carrier, pedagogue, and daughter of the founders of the Colombian League of Hemophilia. She has always been involved in all the projects and activities that have been carried out in the League. She assumed the presidency of the Bogotá chapter (2018) and as a pedagogue, she knows the importance of educating both patients and health personnel about coagulopathies.
Suzanne O’Callaghan
Suzanne O’Callaghan is Policy Research and Education Manager at Haemophilia Foundation Australia. Suzanne has a background in consumer health, education and informed decision-making. She is excited to have been part of HFA’s The Female Factors initiative and to have seen the advances in women and bleeding disorders in recent years.
Cesar Garrido
President
World Federation of Hemophilia
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.
Emna Gouider
Dr Emna Gouider is currently a professor of Hematology in the medical university of Tunis El Manar In Tunisia. She is the head of the hemophilia center in Aziza Othmana Hospital in Tunis, which has more than 700 people with bleeding disorders. She has an experience of more than 10 year with low dose prophylaxis for treatment of PWH. She is a medical member of the WFH board, and she is involved in several WFH committees. She also has been involved in the Tunisian Association of Hemophilia as a member responsible for medical and scientific affairs since 2001, and organized and conducted several nurse workshops, lab workshop, patients workshop and musculoskeletal workshop. Improvement of care and quality of life of PWH in her country is one of her main goals.”
Mathilde Dien
Mathilde, 37 and a severe hemophilia A carrier. “The disease was passed on to me by my father. So it’s a family story that we talk about regularly, especially with my partner. It’s never been taboo in my family. I gave birth in a type 4 maternity hospital, under a protocol drawn up by a haematologist. My 6-year-old daughter has been diagnosed with mild hemophiliac. I’m a technician in the entertainment industry and the disease has never been a hindrance to me.”
Minackshi Dhurmoo-Luchmun
Minackshi is employed at the Haemophilia Association of Mauritius as Programme Coordinator on a full time basis since 2016 and is responsible for the Monitoring and Evaluation of Programmes and Projects. She has a vast experience in the field of NGO since 2009 mainly in poverty, disability, environment and health sector working with direct beneficiaries as well as handling all Financial Tasks of these Associations. Pursuing her ACCA Level 2 after her BSc in Social Work has proved to be only beneficial for her. She has had the opportunity to participate in different training sessions in Project Write up, Strategic Planning and has also benefitted from various education session by National and International Health Care Professionals in the field of Haematology. She is involved in Workshop conducted for Women with bleeding disorders in Mauritius at the Association and has had the opportunity to conduct several presentation to educate and empower these women. She has actively participated in a psychosocial session with the Women on bleeding disorders on ‘Photo Language’ where she had the opportunity to hear the individual stories of each and every women present. She was responsible in developing the Community based Programme for Youths at the SOS Children’s Villages in different localities and has also shared the experience – NMO Leadership Perspective with the WFH through a Presentation. She has represented the Country from the Non Profit Organisation (NPO) sector in 2021 on Countering Terrorism Financing risks with the Financial Action Task Force (FATF) – European Union and has positively contributed to remove Mauritius from the Grey List of countries under increased monitoring by showing how the strategic deficiencies of the Association has been addressed. She has also been a Part time Accounting Educator working with Youngsters aged 15 to 21 years and guiding them towards their career.
Robert Sidonio
Dr. Sidonio graduated from UAB medical school, completed his pediatric residency at the University of Louisville and completed his fellowship at the University of Pittsburgh where he also obtained his Masters in Clinical Investigation. Dr. Sidonio has been the Director of Hemostasis and Thrombosis Clinical Operations at Emory University since 2014. Dr. Sidonio has pilot studies focusing on quality of life and menstrual bleeding treatment in hemophilia carriers and women with low VWF and is the lead PI of the Emicizumab PUP and Nuwiq ITI trial, MOTIVATE ITI Study, Wilate prophylaxis study, Mexico Inhibitor Cross-sectional study and SAFE study. He is a board member of HTRS, HFA, medical advisor for FWGBD and MASAC, THSNA Summit C-Chair and Co-Chair of Women’s Health ISTH SSC.
Noemy Esther Diaz-Burgos
Noemy E. Diaz-Burgos is a second-year M.A. in English Literature student at Florida International University where she is completing her thesis on Afro-Caribbean Literature. In addition to her graduate studies, she is an adjunct professor at FIU for first-year English courses. This summer, she completed internships with Congresswoman Jennifer Gonzalez-Colon (PR-AL) and the Hemophilia Federation of America as a Government Affairs & Policy Intern. In the past, Noemy has worked with the Hispanic Federation helping Puerto Ricans displaced by Hurricane Maria find resources and with the U.S. Department of State as a recruitment intern for the region of Florida and Puerto Rico.
