World Hemophilia Day 2018: WFH to share knowledge about bleeding disorders
New Delhi : The whole world will observe World Hemophilia Day on April 17, 2018. The global bleeding disorders community and the World Federation of Hemophilia (WFH) will come together to promote and encourage knowledge about the disorder.
World Hemophilia Day aims 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. The Hemophilia community is rich with experience and knowledge 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 said “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 gathers 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. Read about interesting facts about hemophilia.
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.
Observers of World Hemophilia Day 2018 will light a red light in their home or office in an individual effort to raise awareness in their close vicinity.