The HERO Research Grant was steered by an international Core Faculty consisting of Alfonso Iorio, MD, PhD, and Diane Nugent, MD. In addition Novo Nordisk was represented by two members of the Novo Nordisk Global Medical Affairs team. Both Novo Nordisk representatives were non-voting observational members of the Core Faculty.
The Core Faculty members were dedicated to identifying the most promising applicants and ensuring a fair selection process and worked with the Review Board of independent experts to select the HERO Research Grant recipients.
Alfonso Iorio, MD, PhD, is associate professor in the Department of Clinical Epidemiology and Biostatistics with Clinical Service at the Hemophilia clinic at McMaster University in Hamilton, Ontario, Canada. He is a member of the Association of Hemophilia Center Directors of Canada (AHCDC) and also a member of the Data and Demographics committee of the World Federation of Hemophilia (WFH). Dr Iorio is associate editor of Internal and Emergency Medicine, as well as a member of the Cochrane Cystic Fibrosis and Genetic Disorders Review Group. He is also on the advisory board of the Journal of Thrombosis and Haemostasis. His clinical research focuses on determinants of inhibitor development in haemophilia. Dr Iorio is a member of the HERO International Advisory Board.
Diane Nugent, MD, is board certified in both paediatrics and paediatric haematology/oncology. Dr Nugent serves as the chief of hematology, medical director of the Blood & Donor Services & Stem Cell Collection and the Hematology Advanced Diagnostics Lab. She is also the founder and medical director of the Center for Comprehensive Care and Diagnosis of Inherited Blood Diseases caring for adults and children. She specialises in all aspects of haematology, including bone marrow failure and transplant, anaemia, immune disorders, bleeding and clotting disorders. She is the principal investigator for the HRSA and CDC cooperative agreements in Western States Hemophilia Network program projects in the area of haemophilia and thrombophilia. Dr Nugent was recognised as ‘Physician of the Year’ in Orange County California and serves as chair of review subcommittees at NHLB1/NIH. Dr Nugent is a member of the HERO International Advisory Board.
A panel of reviewers with different backgrounds (haematologist/MD, haemophilia specialist nurse, psychologist/psychiatrist, and physiotherapist) has been established. Additional reviewers will be engaged as needed.
The role of the Reviewers is to apply area-specific expertise in reviewing applications. The Core Faculty decides which reviewers will review the different applications.
For the past 18 years Greig Blamey has divided his professional interests between inherited bleeding disorders management, and reconstructive hand surgery. He is a Certified Hand Therapist, Sessional Instructor in the Physiotherapy program of the University of Manitoba, and the Physiotherapy Consultant with the Adult Inherited Bleeding Disorders Clinic of Manitoba, based at the Health Sciences Centre in Winnipeg. He has chaired numerous interdisciplinary projects as well as authoring and editing several publications for the Canadian Hemophilia Society. A Past President of the CPHC, he is an active volunteer for the World Federation of Hemophilia, Chairing sessions and delivering platform presentations at World and Musculoskeletal Congresses. He has conducted Physiotherapy and Musculoskeletal Workshops on behalf of the WFH in Eastern Europe, South America, Central Asia, and the Middle East. His research interests in bleeding disorders management focus on proprioception and balance control impacts on joint and muscle health, and crossover effects between the domains of sexual health and musculoskeletal health in the haemophilia population. He is the current Junior Vice-Chair of the Musculoskeletal Committee of the WFH.
Anne Duffy first became secretary of the WFH Psychosocial Committee in 2002 and was Chair from 2010 to 2014. She is a trained nurse and midwife with many years' hospital experience, and has trained as a Gestalt psychotherapist. She has worked with the Irish Haemophilia Society (I.H.S.) since 2001. Mrs. Duffy provides individual counselling for members, visits members at home and in hospital, provides support to members and their families, liaises with health care workers in providing assistance and information for members, represents I.H.S. at hospital Team meetings and on the Consultative Council for Hepatitis C. She prepares articles for I.H.S. publications and acts as the Child Protection Officer for the society. She assists with the organisation of hospital meetings and conferences.
Dr. Angela Forsyth is a physical therapist with more than 17 years of experience specializing in bleeding disorders and otrhopedis. She has previously practiced physical therapy in the Hemophilia Treatment Center (HTC) setting at RUSH University Medical Center in Chicago, Illinois; Christiana Hospital in Newark, Delaware and both The Hospital of the University of Pennsylvania and Thomas Jefferson University Hospital in Philadelphia, Pennsylvania. Dr. Forsyth is an internationally recognized leader in hemophilia physiotherapy, with many published articles and speaking engagements on behalf of patient organizations, including NHF, HFA and the Wolrd Federation of Hemophilia, as well as major clotting factor manufacturers. She has traveled across the United States and more than 20 countries as a speaker and consultant. Dr. Forsyth is also former Chair of the Musculoskeletal Committee of the World Federation of Hemophilia (WFH), past Chair of the Physical Therapy Working Group of the NHF, and past recipient of the NHF Physical Therapist of the Year Award and the NHF PT Excellence Fellowship.
Claude G. Négrier is Professor of Medicine at the Claude Bernard University in Lyon, France and serves as the Chairman of the Haematology Department at Edouard Herriot University Hospital, Lyon. He is also Adjunct Professor in the Department of Medicine in Haemotology/Oncology division at the University of North Caroline, USA. He is a member of the International Society on Thrombosis and Haemostasis, American Society of Haematology and World Federation of Hemophilia. He has authored numerous articles for international journals and text books and is also a reviewer of many reputed journals. He has deep interest in current and future preclinical recombinant technology and clinical use of corresponding clotting factors including gene therapy approaches for haemophilia.
Ann Marie Stain took her nursing training at The Hospital for Sick Children in Toronto, Canada and stayed at the hospital following her training. She has over 30 years of experience in paediatrics and has held the position of Hemophilia Nurse Co-Ordinator in the Comprehensive Care Hemophilia Clinic at The Hospital for Sick Children for 20 years before she retired last year. She continues to be active in education, research and treatment of children and families with inherited bleeding disorders, now on a part time basis. Educational materials for pediatrics have always been a major interest for her. She has published and presented on the national and international stage.
Jan Blatný is a consultant haematologist, paediatric haematology specialist and the Lead Clinician at the Department of Paediatric Haematology and the Centre for Thrombosis and Haemostasis at the Children’s University Hospital Brno, Czech Republic. He is responsible for one of the two paediatric Haemophilia Comprehensive Care Centres in the country. Dr Blatný is the coordinator of the Czech National Haemophilia Programme and cooperates with the Perinatal/Paediatric Scientific and Standardization Committee (SSC) of the International Society on Thrombosis and Haemostasis (ISTH). He serves on the Executive Committee of the European Association of Haemophilia and Allied Disorders (EAHAD) and he is member of the Working Group on Paediatric Haematology of the Czech Paediatric Society, as well as in the steering committee of the Czech Society for Thrombosis and Haemostasis. His main fields of interest are haemophilia, life threatening bleeding episodes and thrombosis in children.
Magdy El Ekiaby
Magdy El Ekiaby is a haematologist, blood transfusion specialist and Head of the Blood Transfusion & Haemophilia Centre at Shabrawishi Hospital in Giza, Egypt. He is Vice President of the Egyptian Society of Haemophilia and member of the Egypt’s National Board of Blood Transfusion, Ministry of Health & Population. Dr Ekiaby is part of the executive team of the International Society of Blood Transfusion (ISBT), which is responsible for the Arab Transfusion Medicine Forum. He is also member of the organizing committee of the ISBT Working Party on Transfusion Transmitted Diseases and of the Board of Directors of the World Federation of Haemophilia.
Margareth Castro Ozelo is Associate Professor of the Internal Medicine Department and Director of the International Haemophilia Training Centre (IHTC) “Claudio Luiz Pizzigatti Corrêa” at the University of Campinas (UNICAMP) in Campinas, São Paulo, Brazil. She received her medical degree, her specialist training in haematology and transfusion medicine and her PhD from UNICAMP before undertaking a postdoctoral fellowship in David Lillicrap’s laboratory at Queen’s University in Kingston, ON, Canada. From 2012 to 2014, she was a member of the Executive Committee of the World Federation of Haemophilia and since 2012 she is a member of the Novo Nordisk Haemophilia Foundation Council. Dr. Ozelo is involved with several research projects, including gene therapy for haemophilia, risk factors for inhibitor development, immune tolerance induction, management of musculoskeletal complications of haemophilia and inherited platelet disorders.
Novo Nordisk was the sponsor of the HERO Research Grant but had no impact on the selection of research/project topics and decision regarding winning applications. Novo Nordisk have had a representation in the Core Faculty of two members with no voting power in the funding decision. Novo Nordisk has provided comments for consideration and served as coordinator of the programme.