MONTREAL, April 17, 2020 /PRNewswire/ — April 17, 2020 celebrates 30+ years of World Hemophilia Day. The longevity of this event is proof of the dedication and tight-knit nature of our community. The theme of World Hemophilia Day in 2020 is "Get+involved". It’s a call to action for everyone to help drive the WFH vision of "Treatment for All" at the community and global level. Given the current COVID-19 crisis, the WFH is encouraging everyone to get involved virtually on social media and on our own World Hemophilia Day microsite: worldhemophiliaday.org.
Everyone can play a part—from patients, family members, and caregivers, to corporate partners, Hemophilia Treatment Centre (HTC) personnel and those who support their national member organization (NMO). We want to encourage everyone to "Get+involved" virtually and help increase the awareness of inherited bleeding disorders and the need to make access to adequate care possible everywhere in the world. If you’re showing support, you’re playing a part in the goal of Treatment for All.
"Getting involved virtually in the bleeding disorders community is so important. World Hemophilia Day is an opportunity to show the world how essential taking action is. It’s also a wonderful way for us all to feel proud of what we’re doing in the name of Treatment for All."
—Alain Weill, President of the WFH
While our community can’t take part in the "Light it up Red" campaign this year by visiting landmarks because of the COVID-19 crisis, there are other ways we can play a part. For example, submit a picture of yourself wearing something red to show your support of the community. Post selfies and engage with the bleeding disorders community on our social media pages. Also, you can share your story on worldhemophiliaday.org about your experience living or caring for someone with a bleeding disorder, or by sharing how you are impacted by the COVID-19 pandemic. There is a lot you can do virtually to share what World Hemophilia Day means to you!
WFH support for the bleeding disorders community is provided by many endeavours which are making a difference in the community today, including:
- WFH programs which are carried out in collaboration with national member organizations (NMOs) and a dedicated group of medical and lay volunteers, and are based on a comprehensive development model that aims to achieve sustainable comprehensive care and "Treatment for All".
- The WFH Humanitarian Aid Program which provides a range of integrated healthcare development training programs to ensure local infrastructure and medical expertise in developing countries maximizes the use of donated products.
- The Global Alliance for Progress (GAP) Program is the WFH flagship development program aimed at closing the gap in treatment between developed and developing countries in three key areas: the number of people born with hemophilia and those who reach adulthood; the estimated and actual number of people known with bleeding disorders; and the need versus the availability of treatment products.
- WFH World Bleeding Disorders Registry (WBDR), which uses data collection 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.
- The WFH Annual Global Survey which 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.
- The WFH eLearning Platform which features hundreds of important educational resources for users with both medical and non-medical backgrounds—in multiple 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.
The WFH would like to thank our 2020 World Hemophilia Day sponsors for their continued support:
BioMarin Pharmaceutical Inc.
F. Hoffman-La Roche Ltd.
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 140 countries and has official recognition from the World Health Organization. To find out more about the WFH, please visit www.wfh.org.
Media contact: Neha Suchak, Director, Marketing & Communications, [email protected], Tel.: +1 514-875-7944, #2857
Related Links :