Semin Thromb Hemost 2005; 31(5): 555-560
DOI: 10.1055/s-2005-922227
Copyright © 2005 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA.

World Federation of Haemophilia Programs in Developing Countries

Paul L.F Giangrande1 , Claudia Black2
  • 1Vice President (Medical), World Federation of Haemophilia, Montréal, Québec, Canada
  • 2Programs Director, World Federation of Haemophilia, Montréal, Québec, Canada
Further Information

Publication History

Publication Date:
08 November 2005 (online)

ABSTRACT

The World Federation of Haemophilia (WFH) is a global not-for-profit organization devoted to furthering the treatment of hemophilia and related disorders. Founded in Montreal in 1963, it has grown tremendously during the last 40 years and now has 107 National Member Organizations and has been recognized by the World Health Organization. The mission of the WFH is to introduce, improve, and maintain care for patients with hemophilia and related disorders. Several specific programs may be used as tools to achieve these goals. The WFH organizes regular educational workshops on key aspects of hemophilia care. Fellowships are offered to approximately 30 healthcare professionals each year that provide funding for a period of study of up to 8 weeks at an International Hemophilia Training Center of their choice. The WFH twinning program helps emerging hemophilia treatment centers develop partnerships with well-established centers. Although the ultimate goal of the WFH is to promote sustainable hemophilia treatment in developing countries, donations of concentrate are regularly made through the Humanitarian Aid program. The WHF launched the Global Alliance for Progress in its 40th anniversary year, establishing a partnership between the WFH and other stakeholders, including the pharmaceutical industry. The aim is to focus on 30 to 40 developing countries during the next 10 years, aiming to more than double the number of patients diagnosed with hemophilia in those countries. The WFH is also involved in fostering discussion on key issues such as safety and supply of blood products.

REFERENCES

  • 1 Larsson S A. Life expectancy of Swedish hemophiliacs, 1831-1980.  Br J Haematol. 1985;  59 593-602
  • 2 Rizza C R, Spooner R JD. Treatment of haemophilia and related disorders in Britain and Northern Ireland during 1976-1980: report on behalf of the directors of haemophilia centres in the United Kingdom.  BMJ. 1983;  286 929-933
  • 3 Smit C, Rosendaal F R, Varekamp I et al.. Physical condition, longevity and social performance of Dutch haemophiliacs.  BMJ. 1989;  298 235-238
  • 4 Royal S, Schramm W, Berntorp E et al.. Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients.  Haemophilia. 2002;  8 44-50
  • 5 O'Mahony B. Global haemophilia care: future challenges and opportunities.  Haemophilia. 2002;  8 515 , (abst)
  • 6 World Health Organization (WHO) .Delivery of Treatment for Haemophilia: Report of a Joint WHO/WFH/ISTH Meeting. London; World Health Organization 2002
  • 7 Kasper C K, Graham J B, Kernoff P BA, Larrieu M J, Rickard K A, Mannucci P M. Hemophilia: state of the art hematologic care 1088.  Vox Sang. 1989;  56 141-144
  • 8 Srivastava A. Choice of factor concentrates for haemophilia: a developing world perspective.  Haemophilia. 2001;  7 117-122
  • 9 Evatt B L, Austin H, Leon G, Ruiz-Saez A, de Bosch N. Haemophilia therapy: assessing the cumulative risk of HIV exposure by cryoprecipitate.  Haemophilia. 1999;  5 295-300
  • 10 Soucie J M, Nuss R, Evatt B and the Hemophilia Surveillance System Projects Investigators et al.. Mortality among males with hemophilia: relations with source of medical care.  Blood. 2000;  96 437-442
  • 11 Srivastava A, Chuansumrit A, Chandy M, Duraiswamy G, Karabus C. Management of haemophilia in the developing world.  Haemophilia. 1998;  4 474-480
  • 12 Isarangkura P. Haemophilia care in the developing world: benchmarking for excellence.  Haemophilia. 2002;  8 205-210
  • 13 Antunes S V. Hemophilia in the developing world: the Brazilian experience.  Haemophilia. 2002;  8 199-204
  • 14 Fontes E M, Amorim L, Carvalho S M, Farah M B. Hemophilia care in the state of Rio de Janeiro, Brazil.  Rev Panam Salud Publica. 2003;  13 124-128
  • 15 Kuhathong K, Chuansumrit A, Keorochana S et al.. Nursing roles in orthopaedic correction in haemophilic patients.  Haemophilia. 2000;  6 672-676
  • 16 Kar A, Potnis-Lele M. Descriptive epidemiology of haemophilia in Maharashtra, India.  Haemophilia. 2001;  7 561-567
  • 17 Rizza C R, Spooner R JD. Giangrande PLF on behalf of the UK Haemophilia Centre Doctors' Organisation (UKHCDO). Treatment of haemophilia in the United Kingdom 1981-1996.  Haemophilia. 2001;  7 349-359
  • 18 Rickard K A. The International Haemophilia Training Centres of the World Federation of Haemophilia: a 3-year review.  Haemophilia. 2000;  6 471-473
  • 19 Jennings I, Kitchen S, Woods T A, Prestson F E. Laboratory performance of haemophilia centres in developing countries: 3 years' experience of the World Federation of Haemophilia External Quality Assessment Scheme.  Haemophilia. 1998;  4 739-746
  • 20 Jennings I, Srivastava A, Kitchen S, Woods T AL, Preston F E. A proficiency testing programme for coagulation laboratories in India: a new collaborative initiative.  Haemophilia. 2002;  8 579 , (abst)
  • 21 Giangrande P LF, Mariani G, Black C. The WFH Centre Twinning Programme: ten years of growth, 1993-2003.  Haemophilia. 2003;  9 240-244
  • 22 Peyvandi F, Mannucci P M. Rare coagulation disorders.  Thromb Haemost. 1999;  82 1207-1214
  • 23 Sukhu K, Poovalingam V, Mohammed R, Giangrande P LF. Ethnic variation on von Willebrand factor levels can influence the diagnosis of von Willebrand disease.  Blood Coagul Fibrinolysis. 2003;  25 247-249

 Dr.
Paul L.F Giangrande

Vice President (Medical), WFH, Oxford Haemophilia Centre and Thrombosis Unit, Churchill Hospital, Oxford OX3 7LJ, United Kingdom

Email: paul.giangrande@ndm.ox.ac.uk

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