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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.
A graduate of the University of Saskatchewan (MD, 1996), Dr. James is a full Professor in the Department of Medicine at Queen’s University. She holds cross-appointments to the Department of Pathology and Molecular Medicine and Pediatrics. She is the Medical Director of the Inherited Bleeding Disorders Clinic of Southeastern Ontario and its aligned Women and Bleeding Disorders Clinic. Dr. James is a Clinician Scientist with an active research program focused on the molecular genetic basis of inherited bleeding disorders and the clinical impact of these conditions. She has published >130 papers in her field and has held/holds multiple national and international leadership roles including Clinical Co-chair of the ASH ISTH NHF WFH VWD Guideline Diagnosis panel.
Cedric Hermans currently heads the Division of Haematology, the Hemostasis and Thrombosis Unit as well as the Hemophilia Center of the Saint-Luc University Hospital in Brussels, Belgium. He was appointed Associate Professor at the Medical School of the Catholic University of Louvain in 2003, Full Professor in 2012 and Vice-Dean in 2015.
Professor Hermans has (co)-authored more than 275 original articles in international journals (H-Index:41) and is a member of several scientific societies and international advisory boards and collaborative research projects.
He was president of EAHAD and is currently member of the Board of Directors of the World Federation of Haemophilia and the Editor-in-Chief of the Haemophilia Journal.
His main research interests lie in the area of haemostasis and thrombosis, especially clinical studies on the treatment modalities and the wide spectrum of complications of haemophilia in both developed and developing countries, as well as new anticoagulants and the management of thrombosis.
Rebecca Kruse-Jarres, M.D., M.P.H., is director of the Washington Center for Bleeding Disorders at Bloodworks Northwest and has clinics at SCCA, Seattle Children’s Hospital and outreach clinics across Washington. She is a UW associate professor of Medicine and adjunct associate professor of Pediatrics. She is listed in the Best Doctors in America.
Dr. Kruse-Jarres believes it to be her duty to be an educator and advocate for patients and their families to ultimately arrive at the best treatment plan.
Dr. Kruse-Jarres earned her M.D. and M.P.H. at Tulane University. She is board certified in Hematology and Oncology. She is on the board of directors of the Hemostasis and Thrombosis Research Society and is an active member of the American Society of Hematology. She has multiple publications in her field and is a reviewer for several major medical journals.
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 post graduate 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 review journal articles and presented 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.
Michael Makris is Professor of Haemostasis and Thrombosis at the University of Sheffield and since 1994 he has been an honorary consultant haematologist at The Sheffield Teaching Hospitals NHS Trust in Sheffield, UK. He is a past president of the European Association for Haemophilia and Allied Disorders (EAHAD) and is a member of the council of the International Society for Thrombosis and Haemostasis (ISTH).
Professor Makris is the project lead for the EUHASS bleeding disorder adverse event reporting scheme in Europe. He is on the Editorial Board of the British Journal of Haematology, Journal of Thrombosis and Haemostasis, Seminars in Thrombosis and Haemostasis, and Blood Transfusion.
Dr. Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan, Ann Arbor, Michigan, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and currently as Chair of the Medical and Scientific Advisory Committee to the National Hemophilia Foundation.
Dr. Veena Selvaratnam is a Haematologist working in Ampang Hospital. She is the Head of Clinical Haematology Reference Laboratory, Hospital Ampang, a committee member of the National Haemophilia Registry and Research Technical Working Committee, Ministry of Health, Malaysia. She was also the medical co-chair for World Federation of Hemophilia (WFH) 2020 World Congress.
Dr. Weyand is a native of Kansas City, Kansas and a graduate of Northwestern University in Evanston, Illinois. She attended medical school at the University of Michigan, completed her pediatrics residency at the University of Washington/Seattle Children’s Hospital and returned to the University of Michigan for her pediatric hematology and oncology fellowship. Clinically, she is particularly interested in young women and girls with bleeding or clotting disorders and is the co-director of a combined hematology/gynecology program serving this population. Her research interests are in genetic modifiers of hemostasis and thrombosis, women and girls with bleeding disorders, hormone provoked thrombosis, and von Willebrand disease.
Runhui WU, MD., PhD., a clinical Pediatrician Hematologist working in Hematology Center, Beijing Children’s Hospital (BCH), focus on Children’s bleeding disorders and the hemophilia pediatrician and director of Hemophilia Comprehensive Care center in BCH . Dr. Wu is a member of HTCCNC (Hemophilia Treatment Center collaboration network of China) and the chair of the Pediatric Workshop and the member of Chinese hematology association-thrombosis and haemostasis branch and hematology department of Capital Medical University, the member of IPSG (International Prophylaxis study group).
Mr. Blamey is a Consultant Physiotherapist with the Adult Inherited Bleeding Disorders Program of Manitoba, located in Winnipeg, Canada. He began working with Bleeding Disorders in 1997, and is a past Chair of both the Canadian Physiotherapists in Hemophilia Care and the Musculoskeletal Committee of the World Federation of Hemophilia (WFH). Mr Blamey has conducted Physiotherapy and Musculoskeletal Workshops on behalf of the WFH in Europe, Africa, South America, Central and East Asia, and the Middle East, and has been an invited speaker to national hemophilia events in Australia, Qatar, the United Kingdom, The United States, Canada, China, Brazil, Ireland, and Singapore. He is a co-developer of the WFH Standardized Global Musculoskeletal Training Curriculum, and Co-Chair of the Multidisciplinary Committee for the 2022 WFH World Congress. In addition to his clinical responsibilities, Mr. Blamey is a Sessional Instructor at the University of Manitoba in the Faculty of Graduate Studies -College of Rehabilitation Sciences.
Amanda lives in Uruguay, a small country in South America. She is Severe Hemophilia A symptomatic-carrier and the mother of two little boys (one with hemophilia). She has been working as a volunteer in Uruguay’s NMO since 2018. She is the recipient of a Susan Skinner fund Scholarship in 2017-18.
Gavin Finkelstein is the President of the Haemophilia Foundation of Western Australia (HFWA). Gavin has severe haemophilia A and hepatitis C. He joined the HFWA Committee and has been involved as a volunteer with Haemophilia Foundation Western Australia since 1995 and was first appointed to the HFA Council in 1998. He has work experience in funds management and has owned and managed his own business. Gavin has previously held office as the HFA Treasurer. Gavin also hosted the WFH World Congress in 2014 as Congress President of the Congress Organizing Committee.
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.
Rick Waines is 51 years old with severe factor VIII, HIV, and has been treated (and cured!!!) for hepatitis C. He credits the Canadian Hemophilia Society as an important advocate and resource for his family since its inception in 1953. His uncle, Bill Rudd, was 12 in 1953, and the first in the family to have severe hemophilia A. Rick’s grandfather started the BC Chapter, and he and his parents served on the board. Uncle Bill was President of the CHS in the 80’s and helped start the Hemophilia Research Million Dollar Club, which to this day ensures that research leading to better treatments continues. Rick serves as Chair of the Education Committee and is a member of the Blood Safety and Supply Committee. He also sits on a Regional Liaison Committee for Canadian Blood Services.
Baiba Ziemele (Riga, Latvia, European Union) became president of Latvia HemophiliaSociety in 2009 and ever since has devoted her life to advocacy of people with bleeding disorders in Latvia and actively participating in World Federation of Hemophilia VWD group and Women’s Committee. Baiba is also a member of European Haemophilia Consortium von Willebrand disease group and represents all people with bleeding disorders from Europe in EuroBloodNet –European Reference network for Rare haematological diseases. She was a professional market researcher and consultant, with BSc in Sociology and MBA, providing services and advice to best known global companies, such as Samsung and GE. Data collection and analysis skills became handy for patient advocacy. In 2016, Baiba became EUPATI (European Patients’ Academy) fellow and is recognized as one of rare disease experts in Europe. Now she plays key role in health care improvements for people with various rare diseases, also bleeding disorders, in her country, Latvia, where she also is president of Latvian Alliance of Rare Diseases and established awiderpatient organization network. Baiba strives to improve access to healthcare not only in Latvia, but also in Europe and globally by putting patient interests first to achieve United Nations Sustainable Development goals. Baiba is one of four people with von Willebrand disease Type 2 in her immediate family.
Marlène Beijlevelt has been a nurse for more than 30 years. She is working as a Hemophilia and Research nurse in the Amsterdam University Medical Center in Amsterdam, Netherlands. Her main focus are young children and their families. Marlène completed her Master of Science in Utrecht and is certified as a Nurse Practitioner. Since October 2020, she is chair of the WFH Nurse committee.
Susan Cutter is a licensed clinical social worker with a Master’s Degree in Social Work, a Master’s Degree in Public Administration and a Certificate in Psychodynamic Psychotherapy. Working as a social worker with the hemophilia population since 1989, she provides a full complement of social work services to individuals and families with bleeding disorders. She participates in hemophilia outreach efforts, including providing social work services to adolescents in transition in an underserved area.
Ms. Cutter has been a professional trainer in the bleeding disorder community in areas such as strengthening patient/provider communications, team building, and conflict resolution. She has been involved in developing a wide range of educational programs, nationally and internationally, focusing on psychosocial issues for patients with hemophilia and their families. Ms. Cutter received the “Outstanding Social Work Award” in 1995 from the National Hemophilia Foundation.
Lochana Nanayakkara qualified in Dentistry from The Royal London Hospital in 1992. She completed her initial training, to gain a Fellowship in Dental Surgery in 1995. She then undertook a 2 year Masters Degree in Conservative Dentistry followed by a 5 year Specialist Training Program in Restorative Dentistry.
Since 2003 Lochana has been a Part-time Consultant in Restorative Dentistry at The Royal London Dental Hospital and a Specialist Prosthodontist in Private Practice.
As part of her Consultant role, she is the Clinical Lead for the Dental management of patients with complicated Medical Histories including Haemophilia. She has been treating patients with inherited bleeding disorders since 2003. In 2014, she helped to launch a new dental service for the North London Adult Haemophilia Network. She was elected as the Western European Representative on the Dental Board of the World Federation of Haemophilia (WFH) and went on to be the Secretary of the Executive Dental Committee for the WFH before being elected into her present role as Vice-Chair in 2018.
Lochana has been developing an interest in the use of low level laser diode therapy to help promote healing and haemostasis in patients with rare inherited bleeding disorders. In 2018 she completed a Fellowship in Lasers in Dentistry from the University of Genoa and Eastman Dental Hospital.
Gianluigi Pasta is an Orthopedic Surgeon of the Orthopedic and Traumatology Department at Fondazione IRCCS Policlinico San Matteo in Pavia. He studied medicine at Palermo University and he received his MD in 1999. At the same University, he received his specialization in Orthopedic Surgery and Traumatology in 2004. Orthopedic consultant at Hemophilia Centre of Palermo University from 2000 to 2006, and from 2006 to 2017 orthopedic consultant of Angelo Bianchi Bonomi Hemophilia Centre of Milan and from 2018 orthopedic consultant at Hemophilia Centre of Pavia. In this capacity, he provides clinical services in terms of musculoskeletal assessment, non-surgical and surgical treatment. He is the President of MSK Committee of the WFH and he is the coordinator of the MSK group of Italian Hemophilia Centres Association. Within this organization, he also serves as a Clinical Mentor for members from all regions of the country with less clinical experience in hemophilia care.
Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, served as its Executive Director, and began their Family Camp. 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 Hemophilia Foundation for 12 years and was promoted to the position of Chief Operating Officer. Dawn also serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. She holds a Bachelor of Science from Montana State University in Bozeman.
Pierre Toulon has more than 30 years’ experience in hemostasis laboratory development and management. He received his Pharmaceutical degree from the Paris XI University in 1987 and completed his PhD at Paris V University in the field of hemostasis and thrombosis in 1991. He was the director of the Laboratory of hemostasis and thrombosis at Cochin University Hospital in Paris, France and Associate Professor of Hematology at the Paris V University between 1987 and 2003, before taking his current position at Nice University Hospital since 2003.
Dr Pierre Toulon is a member of many international and national societies including the World Federation of Hemophilia (vice-chair, Laboratory Science Committee), the American Society of Hematology, the American Heart Association (FAHA, Council on Atherosclerosis, Thrombosis and Vascular Biology), the International Society on Thrombosis and Haemostasis, the International Society for Laboratory Hematology, the French Society of Hematology and the GFHT (French Working Group on Thrombosis and Hemostasis)
