World Hemophilia Day 2009
Together, We Care
World Hemophilia Day 2009 - A Global Celebration
Click here to see how others celebrated World Hemophilia Day.
Around the world on April 17 this year, from Peru to New Zealand, national hemophilia organizations celebrated the 20th anniversary of World Hemophilia Day. While the events held were wide-ranging, all shared the same purpose — to raise awareness about inherited bleeding disorders and to advocate for improved treatment and care.
For World Hemophilia Day this year, the World Federation of Hemophilia produced a video podcast that emphasized the importance and benefits of comprehensive care for people with bleeding disorders. Thousands of people from over 136 countries have viewed the video at www.wfh.org/whd.
The main goal of producing this video, with funding from Baxter, was to provide the bleeding disorders community with a tool to help raise awareness about the need for improved care. To date, the video has been translated into 11 languages and all are available on our website.
We have heard back from many of our national member organizations who incorporated this video into their World Hemophilia Day celebrations, as well as those who are now using it as part of their wider advocacy or educational activities.
This World Hemophilia Day, a record number of countries organized activities. Over 35 countries have sent in their photos and stories.
Spreading the Word in France
The French Hemophilia Association (Association française des hémophiles, AFH) organized a national awareness campaign using France’s national TGV railway system on World Hemophilia Day. The AFH set up mobile multimedia information booths in passenger cars on trains running on the main lines en route to Paris, Lyon, Mulhouse, Marseille, Toulouse, and Perpignan.
For passengers who had little knowledge of hemophilia, this was a unique opportunity to learn the facts. One of the main goals of the AFH was to dispel misconceptions about hemophilia and bleeding disorders. Groups of healthcare professionals along with individuals with bleeding disorders rode the trains throughout the day talking with passengers.
“One thing is clear, it was for me an excellent day of sharing with a feeling of true usefulness,” said Jessica Zenou, from the Ile-de-France regional chapter of AFH. “There was a lot of interest from the passengers who didn’t really know about hemophilia. They were very curious and appreciated our work.”
International Celebration in Iran
The Iranian Hemophilia Society (IHS) held the Esfahan Regional Hemophilia Symposium in April, hosting guests from Egypt, Palestine, Iraq, Lebanon, Turkey, and Azerbaijan. These participants, along with members of the WFH Executive Committee, took part in the Iranian World Hemophilia Day event.
Celebrations included a balloon release accompanied by military band music and a lively play by children with hemophilia acting the roles of the different healthcare professionals who make up the comprehensive care team. In addition, a film was shown about the comprehensive services available at the Iranian Comprehensive Hemophilia Care Centre, featuring a five-year-old boy with hemophilia receiving the full range of multidisciplinary expertise necessary for optimal care.
“Such a gathering reflects our understanding that the well-being of our community is interdependent and that no community can afford to stand alone,” said Aliakbar Tchupan, IHS president. “We are here today because we believe we need to work together. On this World Hemophilia Day let us make sure that advancement of hemophilia care does not benefit only people with hemophilia, but that it benefits all Iranians.”
"Together, we care" Video Podcast Last Updated August 2009
Sarah Ford
WFH Communications Manager
Hemophlia World, August 2009
The World Hemophilia Day web section is supported by funding from:
The video podcast was made possible with funding from:
