WFH NETWORK

Sharing knowledge on World Hemophilia Day 2018

Every year World Hemophilia Day features a different theme. This year’s theme is Sharing Knowledge Makes us Stronger, and on April 17, the World Federation of Hemophilia (WFH), and many other organizations in the bleeding disorders field will be celebrating the role knowledge plays in building a stronger community.

Knowledge is about improving patient care by educating and empowering people with bleeding disorders to live healthier, longer and more productive lives. This can be done by sharing information and data, and by building awareness globally through information exchange, education, and training.

“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 for 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 the community’s capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders.

Those strong bonds can also be built by increasing the worldwide awareness of bleeding disorders. In the past, World Hemophilia Day has featured “Lighting it up red”, and this year will be no different. This April, dozens of landmarks across the globe will be lit up in red in a show of solidarity with our community. Many inspirational images will be seen on social media and elsewhere on the internet, demonstrating the work being done to support the promotion of education and knowledge sharing.   Follow the activities online using the hashtag #WHD2018

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While information collection has been part of the bleeding disorders community since research first began into hemophilia, global data collection started in earnest in 1998, when the WFH began collecting information on hemophilia care throughout the world for the WFH Annual Global Survey. This 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 all over the world with useful information to support efforts to improve or sustain the care of people with bleeding disorders.

Access to information—not just for researchers and for physicians but for all stakeholders in the community—is a key part of the process of sharing knowledge. To mark World Hemophilia Day in 2018, the WFH will be showcasing the WFH eLearning Platform and its in-depth resources that include guides, fact sheets, videos, articles, games, and interactive modules that are great for every learning style and area of interest.

On behalf of the WFH, have a wonderful World Hemophilia Day on April 17, 2018, filled with friends, family, and the knowledge that the global bleeding disorders community is collaborating to help make a difference.