Forum mondial de la FMH

Vice-president Medical, World Federation of Hemophilia

La Jolla, États-Unis

Dr. Glenn Pierce currently serves on the WFH as VP Medical and WFH USA Board of Directors and NBDF (US) Medical and Scientific Advisory Council. He has contributed to the development of multiple new products for the treatment of hemophilia and has over 200 publications. He is an Entrepreneur-in-residence at Third Rock Ventures, and a biotech consultant in the gene therapy and hematological areas. Glenn has been involved in the development of over 6 licensed drugs for hemophilia A or B. He now consults on next generation gene therapies for hemophilia and other monogenic and acquired diseases.

Assistant Research Professor of Pediatrics, Wells Center for Pediatric Research, Indiana University School of Medicine

Indianapolis, États-Unis

Dr. Radek Kaczmarek is an Assistant Research Professor of Pediatrics at Gene and Cell Therapy Laboratory, Wells Center for Pediatric Research, Indiana University School of Medicine (Indianapolis, IN). Dr. Kaczmarek completed his PhD in molecular biology at Hirszfeld Institute of Immunology and Experimental Therapy in Wroclaw, Poland, and MSc in biotechnology at University of Wroclaw, Poland. His research interests include immune responses to gene and protein replacement therapies for hemophilia A and B. Since joining faculty at the Indiana University School of Medicine he has focused on studying the immunogenicity of factor VIII and adeno-associated virus (AAV)-mediated gene therapy for hemophilia A. He has authored more than 60 peer-reviewed publications. His work has been honored with several awards and presented at American Society of Hematology annual meetings, International Society for Thrombosis and Haemostasis and other key international conferences.

Radek is the Chair of the Coagulation Product Safety, Supply and Access (CPSSA) Committee of the World Federation of Hemophilia (WFH), is a member of the WFH Medical Advisory Board, a member of the ISTH Scientific and Standardization Committee (SSC) Working Group on Gene Therapy Steering Committee, a member of the European Haemophilia Consortium (EHC) Medical and Scientific Advisory Group, and a member of the European Haemophilia Safety Surveillance (EUHASS) Steering Committee. He has served on multiple scientific advisory boards and as an ad-hoc expert for the European Medicines Agency (EMA) Scientific Advice Working Party and Pharmacovigilance Risk Assessment Committee. He also serves on the Editorial Board of the journal Frontiers of Immunology.

BOD Lay member, World Federation of Hemophilia
Founding member and Secretary, Haemophilia Association of Mauritius

Quatre Bornes, Maurice

In addition to being a founding member of the Haemophilia Association of Mauritius, Tatiana sits on its Executive Committee and has been the Secretary since its humble beginnings back in 2009. As a member of the bleeding disorders community (her daughter suffers from severe Factor VII deficiency) she has and remains dedicated to improving the care, treatment and management of haemophilia and other bleeding disorders throughout Mauritius. She has been actively involved in the life of the Association and has extensive experience in advocating with Government and large private corporations ensuring the Associations objectives are met and treatment is available to all. Tatiana has recently been co-opted to the Board of Directors of the World Federation of Hemophilia as Lay Member.

Senior Research Manager, Institute for Policy Advancement Limited

Baltimore, États-Unis

Elizabeth Clearfield, Baltimore, MD, is a Senior Research Manager with the Institute for Policy Advancement Ltd. She specializes in core outcome set development and patient quality-of-life studies as part of her focus on patient-centered outcomes research. She works in qualitative and quantitative methods and focuses on study design and methodology for projects aiming to improve comparative effectiveness research and elevate the patient voice through patient- and multi-stakeholder engagement. Recent projects include the coreHEM and coreVWD Core Outcome Set Initiatives, and the development of patient reported outcome measure (PROM) to measure mental health outlook. Elizabeth is also part of the the PROBE Study team.

Director – Research and Data, World Federation of Hemophilia

Montréal, Canada

Donna Coffin, MSc is currently the Director, Research & Data at the World Federation of Hemophilia (WFH) in Montreal, Canada. Donna is an epidemiologist, trained at McGill University in Montreal, and has spent much of her career conducting evidence based research for health care and regulatory agencies around the world. Since joining the WFH in 2016, Donna has established the Research & Data department, with focus on the development and implementation of the World Bleeding Disorders Registry. Her team is also responsible for all WFH research activities, including the WFH Annual Global Survey, the WFH Clinical Research Grant Program, and the production of evidence-based advocacy tools used to promote treatment for all.

Global Development Leader, Roche

Genève, Suisse

Dr. Nicolò Compagno is a medical doctor specialized in clinical immunology with over eight years of experience in clinical development. His work has focused on the design and execution of clinical trials in immunology and hematology, with a particular interest in advancing therapies for rare and complex diseases.

He is currently the Global Development Lead at Roche for SPK-8011QQ, a gene therapy program for hemophilia A, where he oversees the global development strategy and clinical execution.

Chief of Medicine, Brigham and Women's Faulkner Hospital

Boston, États-Unis

Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. His clinical practice focuses on inherited bleeding disorders and he researches cost-effective strategies for the diagnosis and management of hematologic diseases. A graduate of Cornell University, the University of Miami School of Medicine, and the Harvard School of Public Health, he completed an internal medicine residency and a hematology/oncology fellowship at Brown University. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.

Professor, University of Arkansas for Medical Sciences

Little Rock, États-Unis

Dr. Shelley Crary is a Professor of Pediatrics in the division of hematology-oncology at University of Arkansas for Medical Sciences and Arkansas Children’s Hospital. She currently serves as the Co-Director of both the UAMS Clinical and Translational Science Pilot Program and the UAMS Master’s in Clinical and Translational Science Scholarship Program. She is also the medical director of the Arkansas Center for Bleeding Disorders at ACH. Dr. Crary’s primary clinical and research interests are focused on the lifespan care of persons with bleeding disorders and children with clotting disorders. She also has a strong clinical and research interest in the hematologic aspects and medical management of complex vascular anomalies.

Vice President of Research, Typewriter Therapeutics

Wayland, États-Unis

Ari E Friedland, PhD, is the Vice President of Research at Typewriter Therapeutics, a start-up company that focuses on the therapeutic development of mRNA-based, site specific gene insertion technology. Dr. Friedland has ~20 years of experience at the forefront of genome editing, epigenome editing, and synthetic biology. With his early training in the labs of Jim Collins and George Church, Dr. Friedland was the first scientist to publish heritable genome editing in vivo using CRISPR, and joined Editas Medicine as a very early hire who was instrumental in building its gene editing platform. There he also designed, built, and helped test EDIT-101, the first in vivo CRISPR drug administered to patients. This AAV was shown to be efficacious in Editas’ BRILLIANCE Ph 1/2 trial for LCA10 retinal disease. Dr. Friedland was also an early hire at Chroma Medicine (now nChroma Bio), an epigenome editing company, and, after building much of the editing platform, he designed the development candidate mRNA & gRNA for Chroma's lead program, a Hepatitis B-targeting LNP therapeutic that is currently in CTA-enabling studies.

President, World Federation of Hemophilia

Caracas, Venezuela

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.

Vice-President NMO, World Federation of Hemophilia
Chief, Hemophilia Center, Aziza Othmana Hospital

Tunis, Tunisie

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 15 years with low dose prophylaxis for treatment of PWH.

She is the WFH VP NMO, 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 workshops, patients workshops and musculoskeletal workshops. Improvement of care and quality of life of persons with inherited bleeding disorders is one of her main goals.

President, HPS Group, LLC

Silver Spring, États-Unis

Steven A. Grossman, JD, is President of HPS Group, LLC and a highly respected policy and regulatory consultant.
In recognition of his advocacy and policy leadership, he was awarded the Reagan-Udall Foundation for the FDA’s Innovations in Regulatory Science Award in December 2024.
In 2006, in response to the FDA’s chronic underfunding, Mr. Grossman co-founded and later served as Executive Director of the Alliance for a Stronger FDA. This multi-stakeholder coalition has helped grow the FDA’s appropriated budget from $1.6 billion to $3.5 billion and deepened public understanding of the agency's expanding responsibilities and budget needs.
Mr. Grossman’s advocacy is rooted in public service, having spent six years as counsel and Health Staff Director on the Senate HELP Committee and four years as a Deputy Assistant Secretary for Health at HHS.
While in the Senate, he was one of the chief Senate negotiators on the Orphan Drug Act (ODA) and the Drug Price Competition and Patent Term Restoration Act (known as Hatch-Waxman).
While at HHS, he played a significant role in efforts to address the then-early AIDS/HIV crisis and implement the Orphan Drug Act.
Mr. Grossman holds a BA from Oberlin College and a JD from Georgetown University Law School.

Medical & Humanitarian Aid Director, World Federation of Hemophilia

Montréal, Canada

Assad Haffar is currently the Medical and Humanitarian Aid Director at the World Federation of Hemophilia (WFH) based in Montreal, Canada. Dr Haffar earned his MD at the University of Damascus in Damascus, Syria. He subsequently studied at the London School of Hygiene and Tropical Medicine, University of LONDON, London, UK, for his Master of Science in occupational medicine and at the University of Environmental and Occupational Health in Kitakyushu City, Japan, for his Diploma in industrial health.

During his career at the International Labor Organization (ILO), Geneva, Switzerland (1990–1995), he coordinated a large program to improve occupational health services and workers education in selected Middle East countries.

Dr Haffar has worked as coordinator for several projects related to occupational health at the Montreal Re-Adaptation Institute and the McGill University in Montreal, Canada.

Since Joining WFH in 2000, Dr Haffar has been involved in several activities, including twinning partnerships, symposia and workshops in the Middle East and African Region. In addition to leading the Humanitarian Aid Department responsible for the WFH Humanitarian Aid Program which is considered the largest global humanitarian aid program that channels clotting factor concentrates to countries where people with hemophilia have limited access to these products, Dr Haffar assisted many countries in the Middle East and African region in joining and becoming members of the WFH, in developing National Hemophilia Care Programs and in establishing the comprehensive care approach in different hemophilia treatment centers. Since becoming the WFH Medical Director in 2018, he designed and led many WFH medical activities.

BOD Medical member, World Federation of Hemophilia

Bruxelles, Belgique

Cedric Hermans is Head of the Division of Haematology, the Hemostasis and Thrombosis Unit, and the Hemophilia Center at Saint-Luc University Hospital in Brussels. He has been a Full Professor at the Catholic University of Louvain since 2012 and Vice-Dean since 2015.

He has authored over 350 peer-reviewed articles and is involved in multiple scientific societies, advisory boards, and international research projects. A former President of EAHAD, he currently serves on the Board of the World Federation of Hemophilia, is an Associate Member of the Belgian Royal Academy of Medicine, and Editor-in-Chief of Haemophilia.

His research focuses on haemostasis and thrombosis, including haemophilia care in diverse settings, novel anticoagulants, and thrombosis management.

Vice President, Clinical Development, Star Therapeutics

San Francisco, États-Unis

Dr. Kim is Vice President of Clinical Development at Star Therapeutics, Inc., a private biotech company based in South San Francisco, California, where he oversees the clinical development for VGA039, an investigational monoclonal antibody directed against Protein S. He joined Star in March 2022 after previously overseeing the clinical development program/trials for marzeptacog alfa at Catalyst Biosciences, ROCTAVIAN at BioMarin, and Hemlibra at Roche.

Prior to joining industry in 2014, Dr. Kim was an assistant professor in the Division of Hematology and Oncology, Department of Medicine, at the University of California, San Francisco, where he cared for adolescent and adult persons with bleeding disorders in the hemophilia treatment center. He completed his clinical training in hematology/oncology at the University of California, Los Angeles; earned a master’s degree in policy analysis at the Pardee RAND Graduate School; and finished his undergraduate, medical school, and internal medicine residency training at Northwestern University.

Associate Professor of Virology Vice President, Global Pathogen Safety Board Member / Managing Director

Vienne, Autriche

Beyond his work at Takeda, he is Chairman of the Plasma Protein Therapeutics Association’s (PPTA) Pathogen Safety Steering Committee, a Steering Committee member of the Consortium on Adventitious Agent Contamination in Biomanufacturing (CAACB) as coordinated by the Massachusetts Institute of Technology (MIT), and an Associate Professor at the Institute of Virology, Medical University of Vienna. Dr. Kreil obtained a PhD in Biochemistry from the University of Vienna, Austria, and spent several years on post-doctoral research at the same institution focusing on antiviral immunology and specifically, the role of antiviral antibodies. He then joined Takeda (Immuno/Baxter/Baxalta/Shire), working in the area of Pathogen Safety of biopharmaceuticals, as well as research on virus antibodies and vaccines. He is well-published and has been a frequent international lecturer on the safety of biological medicinal products versus viruses and prions as well as antiviral defense, with particular emphasis on the role of virus antibodies/IVIG and vaccines.

Professor, Queen's University

Kingston, Canada

David Lillicrap is a Professor in the Department of Pathology and Molecular Medicine at Queen’s University, Kingston, Canada. He is the recipient of a Canada Research Chair in Molecular Hemostasis. Dr. Lillicrap is a past member of the World Federation of Hemophilia’s (WFH) Medical Advisory Board and Chair of the WFH’s Research Committee. He is a past Chairman of the International Society for Thrombosis and Haemostasis’ Scientific and Standardization Committee, and a past member of the Council of ISTH. Dr. Lillicrap’s research interests are centered on molecular aspects of the hemostatic system with particular emphasis on the potential of molecular genetics and molecular biology to address questions relating to pathological hemostasis. The main foci of interest of his research group are the development and evaluation of novel therapies for hemophilia A, and characterization of the biology and pathobiology of von Willebrand factor.

Scientific Director in the department of Rare Blood Disorders in Research and Early Development, Novo Nordisk

Måløv, Danemark

Jacob Lund, PhD. Scientific Director in the department of Rare Blood Disorders in Research and Early Development at Novo Nordisk A/S. I trained as a biochemist specialized in proteolytic enzymes and hemostasis biochemistry, and have developed a keen interest in gene therapy and genome editing over the past years. In my role, I serve as a project manager for early-stage projects and a scientific coordinator for late-stage developments. Amoung others, I was a part of discovering and developing both Mim8 and Inno8 bi-specific FVIIIa mimetic antibodies curently in development for the treatment of haemophilia A.

Professor, University of the Witwatersrand and NHLS

Johannesbourg, Afrique du Sud

Johnny Mahlangu is a Full Professor of Haematology and Academic Head of the Department of Molecular Medicine and Haematology 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 at the Charlotte Maxeke Johannesburg Academic Hospital. 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. His main area of research is novel therapies in bleeding disorders, in which he has served as Principal Investigator for a large number of international multicentre studies. He has published many peer-reviewed journal articles in high-impact journals, including the NEJM, Lancet, Blood and JTH. He has presented many oral talks and poster abstracts at national and international scientific meetings. His academic citizenship includes membership in many national and international Scientific Committees.

Professor, University of Sheffield

Sheffield, Royaume-Uni

Professor Michael Makris MD, is an Emeritus Professor of Haemostasis and Thrombosis at the University of Sheffield in the UK. He is a past president of the European Association for Haemophilia and Allied Disorders (EAHAD).

Professor Makris is the project lead for the EUHASS bleeding disorder adverse event reporting scheme in Europe.

He is Editor in Chief of the journal of Research and Practice in Thrombosis and Haemostasis and is on the editorial board of the British Journal of Haematology, Journal of Thrombosis and Haemostasis, Seminars in Thrombosis and Haemostasis, and Blood Transfusion.

Senior Hematology Consultant, Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital

Milan, Italie

Maria Elisa Mancuso (MD, PhD) is an Hematologist and works as a Senior Hematology Consultant at the Center for Thrombosis and Hemorrhagic 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 Hematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals as 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, EHA) and she is involved as medical member in the Extremely Rare & Inhibitor (ERIN) Working Group of the European Hemophilia Consortium (EHC). She is the Chair of the Medical Advisory Group of the EHC and vice-president of the Italian Association of Hemophilia Centers (AICE). She has acted 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, synovitis and treatment individualization.

President / Scientific Advisor, Croatian Haemophilia Society / Institute of Social Sciences Ivo Pilar

Zagreb, Croatie

Marko Marinić, PhD, scientific advisor at the Ivo Pilar Institute of Social Sciences in Zagreb, Croatia - research area: quality of life of people with disabilities, quality of life of people with rare diseases, and bioethical issues (the topic of his doctoral dissertation was about the value of human life in contemporary society). Assistant professor at the University of Zagreb, leader or collaborator on numerous scientific projects, author of three books and more than 60 scientific papers, book chapters, congress presentations, etc. Person with severe hemophilia A with inhibitors, president of the Croatian Haemophilia Society since 2017, and since 2022 a member of the Board of Directors of the World Federation of Hemophilia.

Director, Global Development, World Federation of Hemophilia

Montréal, Canada

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.

Associate Professor of Medicine, McMaster University

Hamilton, Canada

Dr. Davide Matino is an Associate 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 roles and functions of coagulation factor VIII and factor IX, funded by the Canadian Institutes of Health Research program and several industry-funded research grants.

Clinical Laboratory Scientist, Haemostasis Laboratory and Scientific Director for the PAEQ-Hemostasia, National External Quality Assessment Scheme for Blood Coagulation at Blood Center, University of Campinas-UNICAMP

San Campinas, Brésil

Silmara Montalvão, PharmD, MSc, PhD is Clinical Laboratory Scientist responsible for the Haemostasis Laboratory and Scientific Director for the PAEQ-Hemostasia, National External Quality Assessment Scheme for Blood Coagulation at Blood Center, University of Campinas-UNICAMP, Brazil. She completes her PhD in Clinical Medicine in 2019 with emphasis in hemophilia and imunologial system. Her research focuses on the development of new methodologies for the laboratory diagnosis of bleeding and thrombotic diseases and the enhancement of laboratory quality assessment tools. She is a member of the advisory group on hemostasis of Brazilian Ministry of Health, member of Latin American Cooperative Group on Hemostasis and Thrombosis (CLAHT) and Chair of Laboratory Science and IEQAS Committee of World federation of Hemophilia (WFH).

Chief Executive, Irish Haemophilia Society

Dublin, Irlande

Brian O’Mahony is the Chief Executive of the Irish Haemophilia Society, a former President of both the World Federation of Hemophilia and the European Haemophilia Consortium. He is a former board member of the Irish Blood Transfusion Service and Chairperson of their research committee. He is the author or co-author of more than 100 peer reviewed scientific journal articles and 2 editions of a tender and procurement guidebook for WFH. 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 postgraduate 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 was born with severe Haemophilia B and is currently participating in a Gene Therapy clinical trial.

Independent Consultant, Marketing Research Bureau

Orange, États-Unis

From 1993 to 2020, Mr. Robert he was the President of the Marketing Research Bureau (MRB) a market research company focused on the blood and plasma industry. Since the company was sold in 2020, he remained active as an independent consultant. Prior to his tenure with MRB, Dr. Robert was Market Research Manager at Miles Pharmaceuticals (now Grifols). Previously, he worked with the International Red Cross Blood Service and other health care-related organizations (WHO, OECD) in France, Switzerland and elsewhere. He holds a doctorate from the University of Marseille/Provence, France, and a Master's Degree from Cornell University, USA.

BOD Lay member, World Federation of Hemophilia
Chief Operating Officer, National Bleeding Disorders Foundation

Gibsonia, États-Unis

Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia and as a symptomatic carrier, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana and served as its Executive Director. 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 Bleeding Disorders Foundation (formerly National Hemophilia Foundation) for 16 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.

Assistant Professor, Division of Hematology, Children's Hospital of Philadelphia

Philadelphie, États-Unis

Ben Samelson-Jones, MD, PhD is Assistant Professor of Pediatrics and the University of Pennsylvania and a pediatric hematologist at The Children's Hospital of Philadelphia (CHOP). He provides medical care for children with blood diseases with a special interest in the children with hemophilia. He is the Associate Director of the Clinical In Vivo Gene Therapy program at CHOP, a member of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics, and faculty for Gene Therapy and Vaccine (GTV) Graduate Program. He is a member of the Editorial Board for the Journal of Thrombosis and Haemostasis and the Board of Directors of the Hemostasis and Thrombosis Research Society.

He is a principal investigator on clinical gene therapy trials for hemophilia A and hemophilia B and has translational laboratory focused on developing novel treatments for bleeding disorders. His laboratory is supported by the National Heart, Lung, and Blood Institute, the National Bleeding Disorders Foundation, as well as by a number of sponsored research agreements with biotech partners.

CVP and Chief Medical Officer for Rare Disease, Novo Nordisk

Princeton, États-Unis

Hematologist, Unity Health Toronto

Toronto, Canada

Dr. Michelle Sholzberg is an Adult Hematologist and Clinician Scientist with a focus on coagulation, iron deficiency and health equity. She is an Associate Professor and the Departmental Division Director of Hematology at the University of Toronto, and the Division Head of Hematology Oncology and Medical Director of the Coagulation Laboratory at St. Michael’s Hospital. She is also the Director of the Hematology-Oncology Clinical Research Group and the Hemequity Lab. Currently, she is involved in the study of: prediction tools for perioperative and traumatic bleeding, the intersection of women’s health and bleeding disorders, treatments for iron deficiency anemia, and new treatments for immune thrombocytopenia.

Pediatric Hematologist, Aflac Cancer and Blood Disorders

Atlanta, États-Unis

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 studies focusing on quality of life and menstrual bleeding treatment in hemophilia carriers and women with low VWF and is the lead co-PI of the MOTIVATE ITI Study, Wilate prophylaxis study series, FEIBA SAFE study and VWD Prophylaxis Network study. He is a HFA medical advisor, medical advisor for FWGBD, ATHN chair and Chair of Women’s Health issues in ISTH SSC.

President and Chief Executive Officer, Institute for Policy Advancement Ltd

Washington, DC, États-Unis

Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement Ltd, specializing in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster University. He has previously led both national and international patient organizations including the World Federation of Hemophilia and National Hemophilia Foundation. He is the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) study, a global research project to enhance the direct patient voice in healthcare decision-making. He holds numerous roles as an advisor on critical blood safety and supply matters including having served on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. He serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. Previously, he was Vice President State Programs at the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He holds degrees in Public and Business Administration from Kansas State University and JD from Washburn University School of Law.

BOD medical member, World Federation of Hemophilia
Professor and Head, Haematology Research Unit, St. John’s Research Institute
Senior Consultant, Department of Clinical Haematology, St. John’s Medical College Hospital

Bangalore, Inde

Alok Srivastava is Professor and Head, Haematology Research Unit, St. John’s Research Institute and Senior Consultant, Department of Clinical Haematology in the St. John’s Medical College Hospital at Bengaluru, India. Prof. Srivastava has been involved with the management of patients with bleeding disorders for over 30 years. His recent research focus has been on novel therapies including gene therapy for hemophilia.

Prof. Srivastava is President of the Indian Association for Haemophilia & Allied Disorders and the Indian Association for Cell and Gene Therapy. He is also the Chairman of the Association for Haemophilia & Allied Disorders – Asia-Pacific. He was the chair of the FVIII/IX subcommittee of the SSC of the ISTH from 2006-2010 and currently serves on the ISTH-SSC Gene Therapy steering committee. He is a member of the board of the WFH and was the WFH Vice-President (Medical) from 2012-2014. He has led the writing group for all three editions of the WFH guidelines for the management of hemophilia.

BOD Lay member, World Federation of Hemophilia
Vice President, Thai Hemophilia Patient Club

Bangkok, Thaïlande

Ekawat Suwantaroj (49), Bangkok, Thailand, was diagnosed with severe hemophilia when he was four months old. He is a graphic designer and owner of a print-design company in Bangkok. He has been a member of National Hemophilia Foundation of Thailand since 2012. In the present, Ekawat is vice president of the Thai Hemophilia Patient Club (THPC) and committee member of the National Hemophilia Foundation of Thailand. Moreover, he has been working with the Thai Rare Disease Foundation (ThaiRDF) as a committee member. He was the first coordinator of Asean Hemophilia Networks (AHN) in 2016. Ekawat was selected to be a WHO patient for patient safety representative from Thailand in 2017. He is now a lay member in the board of directors of the World Federation of Hemophilia (WFH).

VP, Clinical Development, Be Biopharma

Denver, États-Unis

Associate Professor, Department of Pediatrics, University of Michigan

Ann Arbor, États-Unis

Angela C. Weyand, MD, is a native of Kansas City, KS, and a graduate of Northwestern University in Evanston, IL. She attended medical school at the University of Michigan and completed her Pediatrics residency at the University of Washington/Seattle Children's Hospital. She then returned to the University of Michigan for Pediatric Hematology and Oncology fellowship and subsequently stayed on as faculty. Her clinical and research interests are in young women and girls with hemostatic and thrombotic disorders, Von Willebrand disease, iron deficiency, and health equity. She is co-director of a combined hematology/gynecology program and pediatric clinical director of the University of Michigan Hemophilia Treatment Center. She was co-chair of the National Bleeding Disorders Foundation (NBDF) working group to identify a national research blueprint to address the needs of women and girls and those with the potential to menstruate, a member of the ASH Von Willebrand Disease management guidelines and ASH Iron Deficiency Diagnosis guidelines, chair of the ASH Working group on Iron Deficiency, a co-chair of the ISTH Women’s Health SSC, and a section lead on the Lancet Haematology Women’s Health Commission.

Hematologist, Hemocentro UNICAMP

Campinas, Brésil

Dr. Gabriela Yamaguti-Hayakawa earned her medical degree and completed her residency training in Internal Medicine and Hematology at University of Campinas, Brazil. Dr. Yamaguti-Hayakawa received her PhD in Internal Medicine also at the University of Campinas. She now works as a clinical hematologist at Hemocentro UNICAMP, focusing mainly on hemostasis and bleeding disorders.

Head of Thrombosis and Hemostasis Center, Institute of Hematology and Blood Diseases Hospital

Tianjin, Chine (République populaire)

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).