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Donna Coffin, MSc is currently the Director, Research & Education 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 & Education 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.
Born with severe hemophilia B, Prem has been involved in Haemophilia movement in Karnataka and India for over 25 years. He has held various positions in his chapter and the national NMO. He was one of the architects of evidence-based advocacy initiatives in India and played a huge role in establishing the National Hemophilia Registry of Hemophilia Federation (India). Prem has been actively involved in advocating for improvement of treatment and diagnostic facilities in several states of India and led various development projects in HFI. He contributions have led to establishment of several comprehensive hemophilia care centres in the country. Prem is also a member of State Blood Cell, a government decision-making body on blood & bleeding disorders in the state of Karnataka, India.
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. He has previously led both national and international patient organizations including the World Federation of Hemophilia and National Hemophilia Foundation where he currently serves on their Medical and Scientific Advisory Council. 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.
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, and a biotech consultant in the gene therapy and hematological areas.
Dr. Courtney Thornburg is the Director of the Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital San Diego and Professor of Pediatrics at the University of California-San Diego. Dr. Thornburg graduated from Duke University Medical School, completed her pediatric residency at Duke University Medical Center, and completed her pediatric hematology/oncology fellowship at the University of Michigan. While at the University of Michigan, she completed a Master Degree in Clinical Research Design and Statistical Analysis. During her time in Michigan she focused her training on hemophilia and other bleeding disorders and was a NHF-Shire Clinical Fellow under the mentorship of Dr. Steven Pipe. Dr. Thornburg was on the faculty at Duke University from 2005-2013 where she directed the sickle cell and hemostasis and thrombosis programs. Dr. Thornburg is committed to taking care of children with blood disorders including bleeding disorders, clotting disorders and inherited red blood cell disorders. She conducts clinical research to improve the care of individuals with blood disorders. She received an NHF Innovative Investigator Research Award and an investigator initiated award from Biomarin to study patient preferences and shared-decision making related to gene therapy for hemophilia. She is part of the WFH working group on shared decision-making. In order to educate the next generation of physicians, Dr. Thornburg teaches medical students, residents and fellows and is the Director of the Pediatric Hemostasis and Thrombosis Fellowship at RCHSD, a site for the NHF-Takeda Clinical Fellowship program. Dr. Thornburg is a member of NHF’s Medical and Scientific Advisory Council (MASAC). In addition to her career in medicine, Dr. Thornburg enjoys spending time with her family, traveling and playing tennis.
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 320 original articles in international journals and is a member of several scientific societies and international advisory boards and collaborative research projects. He is Member of the Royal Academy of Medicine of Belgium and Fellow of the Royal Colleges of Physicians of London and Edinburgh.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.
Alok Srivastava, MD, FRACP, FRCPA, FRCP Christian Medical College, Vellore, India Alok Srivastava is a Professor of Medicine in the Department of Haematology, and head of the Centre for Stem Cell Research at the Christian Medical College (CMC), Vellore in India. Dr. Srivastava has been involved with the management of patients with bleeding disorders for over 25 years. His group has worked extensively on developing genetic diagnosis of bleeding disorders and clinical protocols for their management including outcomes assessment which address the needs in developing countries particularly the use of lower dose prophylaxis as an alternative to episodic factor replacement therapy. A major focus of his group's current research include assessment of novel therapies in different clinical trials as well as developing gene therapy for hemophilia using both AAV and lentiviral approaches. He leads the World Federation of Hemophilia designated International Hemophilia Training Center at CMC, Vellore. Dr. Srivastava is President of the Indian Association for Haemophilia & Allied Disorders. He is also the chair of the steering committee of the Association for Haemophilia & Allied Disorders – Asia-Pacific. He was the chair of the FVIII/IX subcommittee of the Scientific and Standardization Committee (SSC), International Society of Thrombosis and Haemostasis (ISTH) from 2006-2010. He was on the board of the WFH from 2002-2014 and served as the 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.
Ms. Cassie Osejo was born in León, Nicaragua, currently residing in Panama City, Panama. Is a woman with von Willebrand's disease. •Volunteer since 2010 in the Panamanian Hemophilia Foundation and current Member of the Board of Directors as Responsible legal affairs since January 2020. She leads the group of young people with VWD, and other volunteer groups. •Global group member of “Global VWD Call to Action” of the WFH. •Student of Industrial Engineering at the Technological University of Panama and vice-chair of the student chapter, Technology and Engineering Management Society (TEMS) of the Institute of Electrical and Electronics Engineers (IEEE), the world’s largest technical professional organization dedicated to advancing technology for the benefit of humanity.