On April 17, 2018, the global bleeding disorders community and the World Federation of Hemophilia (WFH) will come together to promote and encourage Sharing Knowledge and the role it plays in building a stronger community.
World Hemophilia Day is an opportunity to help people with bleeding disorders live healthier, longer and more productive lives by educating and empowering them through knowledge sharing, information exchanges, education, and training. This is possible because the bleeding disorders community is rich with experience and wisdom that can help increase awareness and improve access to care and treatment.
“World Hemophilia Day is a wonderful opportunity for our community to make its presence felt,” explains Alain Weill, President of the WFH. “Our focus this year is on Sharing Knowledge because we are convinced that knowledge and education are key drivers in stronger support for patients in our community. The WFH has a long history of collecting data and sharing knowledge. The WFH World Bleeding Disorders Registry (WBDR) is an example of how data collection will be used to advance the understanding and care of people with hemophilia worldwide. An accessible patient registry strengthens our capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders.”
In addition to the WBDR, the WFH Annual Global Survey collects basic demographic information and data on access to care and treatment products in order to provide hemophilia organizations, hemophilia treatment centres and health officials with useful information to support efforts to improve or sustain the care of people with bleeding disorders.
To ensure all members of the bleeding disorder community have access to important clinical and patient-focused information, the WFH developed the WFH eLearning Platform. The platform features more than 500 important resources — in six languages — including guides, fact sheets, videos, articles, games, and interactive modules that are downloadable for free, and are well-suited for any learning style or area of interest.
World Hemophilia Day 2018 activities include a global campaign to light up landmarks around the world in red as has been done so successfully in the past. Members of the community, partners and national member organizations have come together so that local landmarks will “Light up red” on April 17. Also, many people will light a red light in their home or office in an individual effort to raise awareness in their immediate vicinity. To get World Hemophilia Day resources, such as a downloadable poster and social media badges, visit www.wfh.org/en/whd.
The WFH would like to thank our 2018 World Hemophilia Day sponsors for their continued support:
Bayer, BioMarin Pharmaceutical Inc., Biotest, Bioverativ a Sanofi Company, CSL Behring, F. Hoffmann-La Roche Ltd, GC Pharma, Grifols, Kedrion, LFB, Novo Nordisk, Octapharma, Pfizer, Precision BioLogic, Sangamo Therapeutics, Sanofi Genzyme, Shire, Sobi, uniQure
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 over 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 134 countries and has official recognition from the World Health Organization. To find out more about the WFH, visit www.wfh.org.