Adapting to change: sustaining care in a new world

World Hemophilia Day 2021

MONTRÉAL, April 17, 2021 /PRNewswire/ - April 17, 2021 is World Hemophilia Day. The theme of the event this year is "Adapting to change: sustaining care in a new world". This important event is about bringing the global bleeding disorders community together. With the COVID-19 pandemic having a major impact on people with a bleeding disorder, that objective has never been more important. Our community is made up of a great diversity of people—from patients and their families, to carers, physicians and researchers—each of whom has been affected by the pandemic in a different way. We need to continue providing support to these people now, and in the future once the pandemic has passed. The world has changed greatly over the last year, but one thing hasn't: we are still in this together, and we will always be stronger together as a community in our shared vision of "Treatment for All".

"The COVID-19 pandemic has made life challenging for people with a bleeding disorder—but we can't stop striving for Treatment for All. World Hemophilia Day is a platform for showing the world that our community is resilient and we will overcome this new challenge as we have overcome other challenges in the past."— Cesar Garrido, WFH President

The ongoing COVID-19 pandemic means that we can't celebrate World Hemophilia Day in person this year. But, as we have all done for most of 2020, we can adapt to the present circumstances and show the community our solidarity in other ways. For example, people wishing to participate can submit a picture of themselves wearing something red on WFH social media pages. Or, they can share their story on worldhemophiliaday.org about their experience living or caring for someone with a bleeding disorder. Participants can also tell the community about how they have been impacted by the COVID-19 pandemic. And, as always, anyone can contact a local landmark to encourage them to "Light it up Red". There is a lot we can all do to celebrate World Hemophilia Day. The WFH encourages you to once again follow your local public health guidelines in order to engage with the community safely on World Hemophilia Day.

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 care development training programs to ensure the local infrastructure and medical expertise in developing countries are able to use donated products in the most optimal way possible.
• The new WFH Path to Access to Care and Treatment (PACT) Program aims to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders through training, education and evidence-based advocacy. The program will launch in 2021.
• 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.

To learn more about World Hemophilia Day, please visit www.wfh.org/en/events/world-hemophilia-day.

The WFH would like to thank our 2021 World Hemophilia Day sponsors for their continued support:

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.

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SOURCE World Federation of Hemophilia