Martin Bedford started working in haemophilia as a haematology ward manager in the late 1980s, and developed the haemophilia/HIV clinical nurse specialist post in what was to become Kent Haemophilia Centre.
Much of his work has been psychosocial in nature and he developed an interest in HIV survivorship and maternal guilt in haemophilia, the latter being the subject of his masters dissertation. As a key part of his role has been in education of health care professionals, Martin negotiated a lecturer/practitioner role and validated the Essentials of Haemophilia Course, which the Haemophilia Nursing Association (HNA) has been running since 1999. His research interests focus on psychosocial issues, care delivery and advanced haemophilia practice.
Janine Furmedge is the Haemophilia Nurse Coordinator at The Royal Children’s Hospital Haemophilia Centre in Melbourne, Australia.
She has a Post Graduate Diploma in Genetic Counselling and a Masters of Advanced Nursing Practice (Melbourne University). Janine has an interest in exploring the experiences of patients and families and in 2010 conducted a minor thesis examining the experiences and education needs of parents learning to administer clotting factor to their child via an infusaport. In 2012 she received a Bayer Haemophilia Caregiver Award to further this work and developed a parent informed education package.
Chris Harrington is Nurse Consultant in Haemophilia at the Royal Free Haemophilia Centre & Thrombosis Unit in London.
Chris has been a haemophilia nurse for over 27 years, the first 10 years at the Haemophilia Centre at St Thomas Hospital in London. She trained as a nurse at St Mary’s Hospital, Paddington, London and before moving into the field of haemophilia was the neurosurgical unit Sister at the Hospital for Neurology and Neurosurgery, Queen Square, London.
Chris qualified as a teacher before going into nursing and trained as a counsellor at Birkbeck College, University of London. Her MSc dissertation examined the meaning of sport to men with haemophilia. She was the chair of the UK Haemophilia Nurses Association from 2002-2008 and is a co-course leader for the Essentials of Haemophilia Care.
Dan Hart is a Senior Lecturer in Haemostasis and Honorary Consultant Haematologist at The Royal London Hospital and Barts Health NHS Trust, London, UK.
He has a PhD in cellular immunology and completed his haemophilia specialization at The Royal Free Hospital and Great Ormond Street Hospital for Children haemophilia centres. He specializes in inherited bleeding disorders and has an evolving research programme exploring the immunological complications of haemophilia treatment. Current projects include: assay development for antibody detection and epitope identification; computational modeling of fVIII peptide presentation by MHC class II to CD4 T cells; transcriptome analysis monitoring gene expression dynamics after first exposure to fVIII concentrate. He has been a collaborator with the European INSIGHT group investigating inhibitor formation in a large cohort of mild/moderate haemophilia A and also with University of Hertfordshire health psychology team investigating prophylaxis adherence in adolescents and young adults. He is chair of the UK Haemophilia Centre Doctors Organisation Inhibitor Working party, contributing to guideline publication and analysis of national data. He is also the haematology co-lead for the North Thames NIHR research network.
Dr Hart leads the Royal London WFH twinning programme with two large state hospitals in Dhaka, Bangladesh, facilitating their move to cryoprecipitate use from whole blood / FFP and recently organizing laboratory and nursing workshops.
Kate Khair is Nurse Consultant in Haemophilia at Great Ormond Street Hospital for Children in London, where she leads the team providing comprehensive care to children and young people with inherited bleeding disorders.
In 2013 Kate was awarded a PhD in Health and Social Care for the University of Greenwich for a thesis focusing on life experience of children with haemophilia. Following on from her doctorate Kate is now involved in further studies of life experience for children, young people and families with bleeding disorders.
Kate is chair of the UK Haemophilia Nurses Association, secretary of the World federation of Haemophilia Nurses Committee and a Trustee of the UK Haemophilia Society. In her spare time Kate can be found in Africa working with Kenyan and Ugandan haemophilia services.
Bert Leenders is Pediatric Haemophilia nurse in the oncology and haematology unit of Queen Fabiola Children’s University Hospital (de l’Hôpital Universitaire Reine Fabiola) in Brussels. He studied general nursing from 1980 to 1983 and paediatric nursing from 1983 to 1984, and in 1988 received a certificate in nurse education by the National Organisation of Flemish Catholic Nurses (NVKVV). In 2003, Bert earned a certificate in diabetes treatment and education (VUB Brussels).
Working in hemophilia since 1993, he has presented in national and international symposia and organized since 2003 until 2010 a yearly haemophilia nurse meeting in Belgium. Since 2001, he has attended the haemophilia summer camp for children organised by the National haemophilia organisation (AHVH). In 2010 a followed a formation in patient therapeutic education (IPCEM France). Bert has worked on the development of several educational materials. He is a member of the nurse committee of the European Association for Haemophilia and Allied Disorders (EAHAD) and is a member of the nurse advisory boards for Bayer and Novo Nordisk.
Dr Sébastien Lobet is currently physiotherapist and researcher at the Haemostasis and Thrombosis Unit of the Cliniques Universitaires Saint-Luc in Brussels, Belgium.
Presently, his main research interests lie in the area of musculoskeletal assessment in children and adults with hemophilia. He completed a PhD thesis at the Catholic University of Louvain. His main research focuses on the functional assessment of hemophilic arthropathy by three-dimensional gait analysis.
In 2009, Dr Lobet received the Henri Horoszowski Memorial Award of the World Federation of Hemophilia for his research. In 2010, he also received the Baxter “Heroes in Hemophilia” Award, and in 2012, he received a Bayer Healthcare Early Career Investigator Award to complete a post-doctoral fellowship at the KU Leuven University.
Paul McLaughlin MSc, MMACP works as a Clinical Specialist Physiotherapist in Haemophilia at the Katharine Dormandy Haemophilia Centre at the Royal Free Hospital in London.
Paul completed his undergraduate degree at the University of Ulster in Belfast, Northern Ireland, in 2000 and his Master’s degree in Advanced Physiotherapy (Neuromusculoskeletal Rehabilitation) at King’s College London in 2009. He is a member of the Musculoskeletal Association of Chartered Physiotherapists (MACP), a specialist group of therapists utilizing expertise in musculoskeletal assessment and treatments. His clinical interests are management of chronic musculoskeletal pain in Haemophilia, lower limb biomechanics, manual therapy and the use of exercise as a rehab tool.
Paul is currently the chairman of the UK group of specialist physiotherapists working in haemophilia.
Jim Munn is a Clinical Nurse and Program Coordinator at the University of Michigan Hemophilia and Coagulation Disorders Program.
He received his BS, MS and BSN degrees from the University of Michigan. Jim Munn has served as Chair, Vice-Chair, and Regional Representative for the National Hemophilia Foundation’s Nurse Working Group, and as the US Representative, Vice-Chair and Chair for the World Federation of Hemophilia Nursing Committee. He is treasurer of the International Society on Thrombosis and Haemostasis Nurses Forum, which develops program content and arranges speakers for the biannual ISTH meeting.
Anica Phillott is Haemophilia Network Nurse Manager at North Hampshire Haemophilia Centre, Basingstoke and North Hampshire Hospital NHS Foundation Trust in the UK.
Anica qualified as a paediatric nurse in the early 1990s and worked within the acute and day care setting up to the position of a ward sister. In 2004 she switched to specialised nursing and began her haemophilia career at Great Ormond Street Hospital in London. She also worked at St Thomas’ Hospital before moving to Basingstoke Hospital. Anica has also furthered her knowledge with a BSc in Child Health and an MSc In Public Health and Health Promotion.
Debra Pollard MSc, RN is Lead Nurse at the Katharine Dormandy Haemophilia Centre where she has worked since 1991.
Her main academic interests lie in qualitative research, particularly relating to the quality of life of people with bleeding disorders. She completed her MSc in Advanced Practice in 2014 with a research project exploring how men with haemophilia describe their quality of life. She has a particular interest in supporting the needs of women with bleeding disorders. Debra served as a Trustee of the UK Haemophilia Society from 2005-2012 and continues as part of their Clinical Advisory Board.
BJ Ramsay is Haemophilia Nurse Specialist at the Wellington Haemophilia Centre in Wellington, New Zealand.
He was born at an early age in Scotland, he has worked in haemophilia for over 13 years, initially in the Kent Haemophilia Centre, Canterbury, United Kingdom, and in Wellington since 2008. BJ is fascinated by the psychosocial aspects of care in haemophilia, and the impact it has on people with haemophilia and their families. He is also interested by the roles of the multi-disciplinary team (MDT) in haemophilia care and loves to learn from the various specialties he interacts with and seeks to use this learning to promote a holistic care environment and a more seamless and co-ordinated network of haemophilia management for our patient group.
Since 2010, Marlies Schrijvers is working on a PhD project specializing in adherence and home treatment in prophylaxis. She also worked as a haemophilia nurse at the Van Creveldkliniek in the UMC Utrecht. In July 2013, Marlies Schrijvers obtained her Master’s degree in Nursing Science. She hopes to finalize her thesis early in 2015.
Furthermore, Marlies is a member of the nurses working group of the European Association for Haemophilia and Allied Disorders (EAHAD) and a member of the European Haemophilia Centre Certification committee. She obtained experience in reviewing articles for the journal Haemophilia.
Vicky Vidler is the Nurse Consultant at Sheffield Children’s NHS Foundation Trust and cares and supports children and families affected by benign haematological conditions.
Vicky is the Course Leader for a Masters level educational module – Advancing Haemophilia Practice.
Sylvia von Mackensen is a senior scientist at the Institute of Medical Psychology at the University Medical Centre in Hamburg, Germany, and was visiting scientist at the Haemophilia and Thrombosis Centre in Milan, Italy from 2007-2010.
She received her diploma in Psychology in 1994 from the Catholic University of Eichstätt, Germany, and performed her PhD at the Department of Medical Psychology at the Ludwig-Maximilian University in the fields of environmental medicine and health-related quality of life. Her main interest is quality of life research relating to people with bleeding disorders, especially with haemophilia, where she is working since 1999. She developed several disease-specific questionnaires for the assessment of quality of life and treatment satisfaction in patients with bleeding disorders such as haemophilia, ITP and VWD. In 2003 she received a Bayer Hemophilia Caregiver’s Education Award to undertake the SPHINX project – a Specialization Program for Hemophilia Nurses in Italy. Other fields of interests are urinary tract infections, hereditary angioedema, cleft-lip-palate, MDS, thalassemia, MS and diabetes.
She is a lecturer in Medical Psychology at the Institute of Medical Psychology at the universities of Hamburg, Göttingen and Munich (Germany). She is a lecturer at the International Haemophilia Course in Malmoe, Sweden.
Dr Michelle Witkop is a doctoral prepared nurse practitioner practicing at the Northern Regional Bleeding Disorders Center in Traverse City MI.
She is the 2015 recipient of the Nurse of the Year Award from the American Nurse Credentialing Center (ANCC) for Transformational Leadership, the Chair of the National Hemophilia Foundation Nursing Work Group and was the Co-Chair of NHF’s Annual Meeting for 2014 and 2015. As well as being a charter member of the American Thrombosis & Hemostasis Network’s National Hemophilia Program Coordination Center Advisory Committee, Dr Witkop is an ATHN/HRSA Demonstration Project of National Significance Grantee with the project, “Evaluating a Nurse Practitioner Medically Lead Hemophilia Treatment Center in Comparison to a Physician Medically Lead Hemophilia Treatment Center”.
Dr Witkop’s background includes extensive experience in pain management including chronic pain and palliative care. She has been the principal investigator for multiple hemophilia pain research studies including the National Pain Study and the IMPACT Quality of Life Studies. She has published multiple articles as well as lectured extensively.