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HFA joins organizations and individuals across the country and the world as we celebrate and honor people who are or have been affected by bleeding disorders. Learn about these celebrations and help us raise awareness for our community:

World Hemophilia Day – April 17th World Hemophilia Day

Each year, tens of thousands of families across the nation and around the world celebrate World Hemophilia Day to raise awareness of bleeding disorders. World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment. Worldwide, 1 in 1,000 women and men have a bleeding disorder, and 75% of them still receive inadequate or no treatment at all.

World Hemophilia Day focuses attention on the importance of comprehensive health care. Such care is at the heart of major changes currently happening to our healthcare system and can positively impact the health of families. Comprehensive care is particularly important to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders. An estimated 3-5 million Americans have a bleeding disorder, including about 20,000 with hemophilia — affecting all ethnic and economic groups.

“World Hemophilia Day is about shining a light on a disorder too few understand, and too many are affected by. HFA stands with thousands of families around the world in calling for better treatments and quality of life for those affected by bleeding disorders.” Rich Pezzillo, HFA Communications Director

Resources

World Hemophilia Day (from the World Hemophilia Federation)

National Hemophilia Awareness Month

March is Designated to Create Public Awareness about Bleeding Disorders

In 1986, President Ronald Reagan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living with a bleeding disorder. Hemophilia Federation of America (HFA), along with its member organizations across the country, commemorates March as National Hemophilia Awareness Month.

HFA encourages member organizations and patients affected by a bleeding disorder to spread the word about Hemophilia Awareness Month by posting messages on Facebook, Twitter, giving presentations in schools, and sharing information with their family and friends. Visit the bleeding disorder sections on our website to learn more about hemophilia, von Willebrand Disease and other rare bleeding disorders.

Resources

President Reagan’s proclamation that declares March National Hemophilia Awareness Month

World AIDS Day – December 1st

Aids ribbonSince 1988, December 1st is observed as World AIDS Day. The World Health Organization designated this day to ensure renewed and ongoing attention to the threat posed by HIV/AIDS. It is estimated by Centers for Disease and Control (CDC) that over 1 million people in the United States are currently living with HIV.

Hemophilia Federation of America (HFA) observes and acknowledges this day in honor of our community members who contracted HIV and hepatitis C after injecting contaminated antihemophilic clotting factor into their bodies prior to 1985. Approximately ten thousand people with hemophilia contracted HIV (and hepatitis C) during this time, and no less than eight thousand have died.

In honor of our community members who are deceased and those who still struggle with co-morbidities contracted from contaminated products, we offer our gratitude for the heroic diligence and sacrifice in ensuring a safe blood supply for all.

Promote a World AIDS Day Resolution

Please consider pursuing a World AIDS Day resolution in your hometown, county, or state. Ask state legislators, county executives, members of your county’s board, commission, mayors, and city council members to introduce a public resolution observing World AIDS Day. HFA’s World Aids Resolution is below:

On December 1st, the bleeding disorders community marks World AIDS Day. The AIDS pandemic has taken a tremendous toll on families across our community. HFA and the bleeding disorders community offer a resolution that addresses blood safety and awareness upon the occasion of World AIDS Day. The experience of our community is one in which these two concerns are intertwined.

The text provided marks the passing of community members and calls attention to the need for ongoing vigilance with respect to America’s blood supply. It is our intention in furnishing community members and member organizations with this prepared text that you will solicit support for the passage of this measure at the state and local level, in the communities where you live and work.

Resources

Sample Letter to Petition World Aids Day Resoultion

NIH Statement on World AIDS Day

NHF Washington Days

The National Hemophilia Foundation (NHF) holds an annual event, “NHF Washington Days”, to advocate for the bleeding disorders community. Everyone affected by hemophilia or other bleeding disorders are invited to participate. For additional information, please visit the National Hemophilia Foundation at http://www.hemophilia.org.

“Washington Days provides an opportunity for individuals and caregivers to share their story and their concerns. HFA encourages community families to be self-advocates, know the issues impacting people with bleeding disorders and knowing the legislators who make decisions on behalf of us all.” Kimberly Haugstad, HFA Executive Director

 

Assisting and Advocating for the Bleeding Disorders Community