Monday, April 17, 2017

World Hemophilia Day 2017



  1. World Hemophilia Day was started by the World Federation of Hemophilia (WFH) in 1989 to increase global awareness of hemophilia and other bleeding disorders. 
  2. April 17th was selected in honor of the birthday of Frank Schnabel, founder of WFH.
  3. The WFH was established by Frank SchnabeLloyd in 1963 and has its headquarters in Montreal, Canada. It has member organizations in 113 countries and official recognition from the World Health Organization. 
  4. The aim of World Hemophilia Day is to raise awareness about hemophilia and increase the availability of treatments for this condition around the world.
  5. Hemophilia A results in impaired clotting mechanisms due to missing or reduced levels of factor VIII. People with hemophilia A experience recurrent and extended bleeding episodes that cause pain and irreversible joint damage. 
  6. Advate, Kogenate and Kovaltry - are approved for prophylactic use in patients with hemophilia A.
  7. Hemophilia B is a genetic disorder caused by missing or defective factor IX. Although it is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a change in a gene. 
  8. Idelvion and Ixinity are approved for prophylactic use in patients with hemophilia B.
  9. Hemophilia is a condition in which bleeding is prolonged. Hemophilia is a condition present from birth and is normally inherited; you can't 'catch' hemophilia or pass it onto others. In some rare instances, hemophilia may develop later in life (typically affecting people in the 50+ age group).
  10. The slogan for World Hemophilia Day is 'Close The Gap', which reflects the difference in treatments available to people living in different parts of the world. By working together, it is hoped that we can close the gap of hemophilia care around the world. 'Close The Gap', is an apt phrase; when blood clots, a 'gap' is closed which stops bleeding.
  11. The World Federation of Hemophilia provide resources for those wishing to get involved in this campaign. Resources include posters, information on why people should participate in World Hemophilia Day, a logo, press release templates and suggested activities.
  12. Hear Their Voices is the theme for 2017, and the focus is on supporting women around the world affected by bleeding disorders.

References:

http://metro.co.uk/2017/04/17/world-hemophilia-day-what-is-it-and-why-is-it-important-6577582/
http://www.raredr.com/news/april-17-is-world-hemophilia-day
http://www.whathealth.com/awareness/event/worldhemophiliaday.html
http://www.worldhemophiliaday.org/
https://en.wikipedia.org/wiki/World_Federation_of_Hemophilia
https://www.wfh.org/en/page.aspx?pid=492
https://www.youtube.com/watch?v=4okKKJiwaU0

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