Speak out. Create change.
By Haemnet
As today is World Haemophila Day, it seems only right to re-run the official WFH statement, in case anyone has missed it.
MONTREAL, April 16, 2014 /PRNewswire/ — Every year on April 17, World Hemophilia Day is observed around the world to increase awareness of hemophilia and other inherited bleeding disorders. In 2014, World Hemophilia Day’s theme will encourage the younger generation of the global bleeding disorders community to “Speak out. Create change.”
“World Hemophilia Day is part of our critical effort to aid in ensuring a better diagnosis and help gain access to care for the millions who have a rare bleeding disorder, yet remain without treatment. This year we are making a particular effort to reach out to young members of the community to promote participation and to develop strong future leadership,” said Alain Weill, President of the World Federation of Hemophilia.
The WFH will feature an informative infographic campaign on Facebook that invites our community to comment on, like and share infographics featuring various topics about living with hemophilia and other bleeding disorders to help educate our community and the general public.
Also on April 17, the WFH will run an online photography competition, focused on why the bleeding disorders community is unique and should be celebrated. Participants are encouraged to submit their photos through Facebook using the hashtag #UR1in1000 (an estimate of how many people live with a bleeding disorder).
“Through World Hemophilia Day and our photo competition, we can show the positive energy and change that our community can create,” said John E. Bournas, CEO and Executive Director of the WFH. “So I urge everyone to get out there, start taking pictures and sharing them with friends and family. Together we can raise awareness on the need to achieve treatment for all.”
As part of World Hemophilia Day activities, the CN Tower in Toronto, Niagara Falls in Ontario and New York, Langevin Bridge in Calgary, and the AAMI Park at the Olympic Parks in Melbourne, Australia will be lit in red to show their support.
These important World Hemophilia Day initiatives would not have been possible without the support of our sponsors; Baxter, Bayer, Biogen Idec, CSL Behring, Novo Nordisk, Precision Biologic, and Sobi. We are also grateful to our lighting partners, The CN Tower, The Niagara Falls Illumination Board, the Calgary Municipal Land Corporation, the Leonard P. Zakim Bunker Hill Bridge in Boston and the AAMI Park in Melbourne for helping to raise awareness for those living with a bleeding disorder.
To find out what is happening in your area, contact your local hemophilia organization. For a list of our member organizations, please go to our website and search our Global Treatment Centre Directory.
About hemophilia and other bleeding disorders
Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.
About the World Federation of Hemophilia
For 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 122 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.
SOURCE World Federation of Hemophilia (WFH)
Mike Holland founded Haemnet and SixVibe. He is a medical writer, editor and event organiser – find him at Google+