Alok Srivastava
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.
Abdoulaye Loum
President Association Sénégalaise des Hémophiles (ASH) Dakar, Senegal
Cassie Osejo
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.
Lauren Phillips
Lauren has been involved in the bleeding disorders community and the Haemophilia Foundation of New Zealand since 2003 when her family returned to New Zealand from the UK. She is an active member of HFNZ Board. Lauren has worked alongside others to lead the youth twinning pilot between Nepal and New Zealand. She currently sits on the Women with inherited bleedings disorders advisory committe for the WFH. Lauren practice environmental and resource management law and lives on the remote West Coast of New Zealand with her husband and daughter. As a woman with moderately severe von-willebrands Type 1 Lauren has a particular interest in the experiences of women living with a bleeding disorder and the availability of quality multi-disciplinary care.
Tahira Zafar
Tahira Zafar MD MBBS,DCP,MRCPath ,FRCPath • Director Haemophilia Treatment Centre (HTC), Haemophilia Patient’s Welfare Society (HPWS), Rawalpindi, Pakistan. • Chairperson Medical Advisory Board (MAB)HPWS Rawalpindi • Member National MAB, Haemophilia Foundation of Pakistan (HFP) • Member, Executive Board, Hemophilia Patients Welfare Society, Rawalpindi • Professor of Haematology, Frontier Medical College, Abbotabad, Pakistan • Member, Steering committee, WFH, HEMNET group • Faculty Member, The Aslan Project for educating physicians in developing countries for care of children with cancer • Founder member, Hemophilia Patients Welfare Society , Rawalpindi Graduation: King Edward Medical College, Lahore Pakistan Training in UK: St Georges Hospital Medical School Royal free Hospital & Medical School i Kent Hemophilia Center ,Canterbury Experience in Pakistan : Armed Forces Institute of Pathology (AFIP), Rawalpindi Pakistan. Founded Haemophilia patients Welfare Society (HPWS), Rawalpindi, in 1999 and have been closely associated with it. Pioneer in developing the first HTC of HPWS, Rawalpindi & Children & Adult HTC’s at Pakistan Institute of Medical Sciences (PIMS), Islamabad. The Centre has 1200 registered patients. Run regular educational programs for; Medical students, doctors, hematologists, nurses & physiotherapists Actively involved in awareness programs for patients & general public Publications 50 publications. In addition to this published 6 awareness booklets for patients in Urdu (local language), 6 awareness booklets for care givers in English, Booklet on Surgery in patients with Inherited Bleeding Disorders Guidebook on management of HTC Haemophilia Handbook for caregivers. Chapter on Women With Inherited Bleeding Disorders in different cultural settings,2nd edition . Wiley Blackwell ()
Roshni Kulkarni
Dr. Kulkarni is currently Professor Emerita of Pediatrics and Human Development and Director Emerita of the Michigan State University (MSU) Center for Bleeding and Clotting Disorders and was the founder and Director emerita of Pediatric and Adolescent Hematology/Oncology (PHO). She was the Director and distinguished Hematology Consultant, Division of Blood Disorders, at the Centers for Disease Control and Prevention (CDC), Atlanta GA. She is widely published and is a founding member of the Foundation for Women and Girls with Blood Disorders (FWGBD)as well as past board member of HTRS and holds membership on numerous national, international and federal committees. She has received numerous awards including the Hemostasis and Thrombosis Research Society 2023, Lifetime Achievement Award, named one of the “Women in Medicine” by FWGBD, “Eternal Spirit” award from Coalition for Hemophilia B, “Fairy Godmother to women with Hemophilia” by Hemophilia Foundation of Michigan, National Hemophilia Foundations (NHF’s) “Physician of the Year” in 2003 and Lifetime Achievement Award in 2008, the MSU “Distinguished Faculty” award, and distinguished service awards from the Federal Drug Administration (FDA) and CDC. In 2016, she was honored as one of the “Women Leaders in Hematology” in the American Journal of Hematology.
Yannick Collé
Yannick Collé is a carrier of hemophilia A, with mild hemophilia A. She is co-leader of the French NMO Women’s Committee for 15 years. She is a member of the EHC WBD Committee for 5 years and also a member of the WFH WGBD committee since 2022. Her main goals are to organize actions for and with WBD inside the BD community and advocate for awareness campaigns to the general public.
Baiba Ziemele
Baiba Ziemele is a passionate patient advocate from Latvia. Living with inherited bleeding disorder, von Willebrand disease (VWD), she has been heavily involved in patient advocacy, becoming president of Latvia Hemophilia Society in 2009, representing European community with bleeding disorders as ePAG in EuroBloodNet, European Reference Network for rare haematological diseases, engaging in Women’s and Girls with Bleeding Disorders Committee and VWD and Rare Bleeding Disorders committee at World Federation of Hemophilia and VWD Committee at European Haemophilia Consortium. She has helped shaping rare disease field nationally and internationally. Since 2018, Baiba is also building Latvian Network of Patient Organizations to bring united patient voice and represent patient interests at various tables. In 2022, Baiba received Human Development award for outstanding contribution to health from Civic Alliance Latvia and US Embassy in Latvia.
Anupama Pattiyeri
A sufferer, caregiver and dentist, Dr Anupama Pattiyeri started volunteering for Hemophilia community since the inception of her local Hemophilia chapter “Hemophilia Society Calicut Chapter” in 1999 when she was only 15. Sibling of a Person with severe Hemophilia A, married to a Person with severe Hemophilia A with inhibitors and recently diagnosed to have a deficient level of Factor VIII, Dr Pattiyeri knows the various issues faced by the Hemophilia Community. She has been actively involved in primary counseling regarding Hemophilia as well as educational and financial empowerment among young Hemophilics and women of the bleeding disorders community. Anupama serves as the Executive Committee member of Hemophilia Federation (India) , the South Regional Coordinator of Women’s Group of Hemophilia Federation India , Joint Convener State Coordination Committee – Kerala and as the Vice President of Hemophilia Society Calicut Chapter. Dr Anupama Pattiyeri also serves as a member of the WFH’s Women with inherited bleeding disorders committee. Inclusion of persons with rare bleeding disorders and women bleeders in treatment policies, leadership and capacity building workshops is a subject very close to her heart.
Johanne Ouédraogo
Johanne Ouédraogo is a global health and public health specialist with more than 8 years of experience managing integrated global health and health research projects and teams. She holds a master’s degree in Public health, as well as a DESS in Development and Humanitarian Aid Management. She has a multidisciplinary profile, combining a great experience in project management as well as an excellent knowledge of women’s sexual and reproductive health and rights and gender-based approach and work in cross-cultural setting. At the World Federation of Hemophilia, Johanne is a Program Coordinator in charge of the Women and Girls with Bleeding Disorders initiative, the VWD initiative, and the Susan Skinner Memorial Fund scholarships program. She leads the production of the first global survey of national members organizations on women and girls with bleeding disorders. Johanne previously worked in several NGOs such as WUSC (world university service of Canada) and the Canadian Red Cross. She is the author of several scientific articles, as well as various posters and presentations at conferences and symposiums on current health topics.
