WFH NETWORK

Global bleeding disorders community comes together to support women affected by bleeding disorders on World Hemophilia Day 2017

On April 17, our community will come together to show support for the millions of women and girls affected by bleeding disorders.

It is our goal to use World Hemophilia Day as an opportunity to raise awareness for various issues that our global community faces as a whole. The reality is that women in the bleeding disorders community have faced many challenges securing diagnosis, treatment, and support in the past and it is our goal for all people who suffer from a bleeding disorder to come together, recognize one another, and provide much-needed support.

“It is our mission to improve and sustain care for all people with inherited bleeding disorders, including the girls and women within our community,” said Alain Weill, WFH President. “Whether women have a bleeding disorder themselves or are part of the support network for someone else within our community, we need to recognize that there can be a significant impact on their health and quality of life. On World Hemophilia Day this year, we recognize the many contributions that women have made to improve the lives of those with a bleeding disorder, either through their own advocacy or support of their loved ones.”

To mark World Hemophilia Day 2017, the WFH global community will come together online at www.worldhemophiliaday.org. This website provides a space for people to tell their story, discuss the challenges they have faced and provide support to one another. All will be invited to post their thoughts, and if they choose, share a photo, and have the opportunity to comment on one another’s posts.

We encourage our community to go to the WFH eLearning Platform at elearning.wfh.org to learn more about women and bleeding disorders, as well as access other educational resources including many webcasts, eLearning modules, and other tools

Our 2017 activities will also include a global campaign to light up landmarks around the world in red for World Hemophilia Day as we have done successfully in the past. We encourage our community to light a red light in their home or office as an individual effort to raise awareness in their immediate vicinity.

The WFH would like to thank our 2017 World Hemophilia Day sponsors for their continued support:

Bayer

BioMarin

Biotest

Bioverativ

CSL Behring

F. Hoffman La-Roche

Green Cross

Grifols

Kedrion

LFB

Novo Nordisk

Octopharma

Pfizer

Precision Biologic

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. Visit WFH online at www.wfh.org.