Activities are underway to mark Bleeding Disorders Awareness Month, set aside each March to call attention to such disorders as hemophilia and von Willebrand disease, and the more than three million U.S. residents living with them.
Patients, caregivers, and activists nationwide are jumping on social media platforms, taking snapshots, sharing bleeding disorders facts, learning to become advocates, sporting special gear, and holding fundraisers — all in the name of raising awareness and support for those with a bleeding disorder.
These conditions prevent blood from clotting normally, so that injury, surgery, or physical trauma brings prolonged and uncontrolled bleeding. Sometimes, bleeds start without any evident cause.
Observed each March since 2016, Bleeding Disorders Awareness Month seeks to heighten their awareness among the general public, as well as bring them to the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.
The event is coordinated by the National Hemophilia Foundation (NHF), which is offering several ways to get involved this year. For one, the organization is inviting supporters to learn to become advocates for the bleeding disorders community. Go here for more information about fighting for access to healthcare.
“We have advocated for the needs and interests of people affected by hemophilia, von Willebrand disease, and other bleeding disorders for almost 60 years,” the NHF states on its Awareness Month webpage. “With our volunteer advocates, we have educated elected officials and others in government about the unique needs of people with bleeding disorders.”
Another way to express support is by taking a photo in the NHF “photo booth” and sharing it on social media, tagging #BDAM and #BleedingDisordersAwarenessMonth. Participants also are encouraged to wear red — the official color for bleeding disorders — to spark conversations about these disorders throughout the day.
As part of its efforts, NHF offers information about bleeding disorders, including “fast facts,” types of bleeds, symptoms, and treatments. It also is urging supporters to become involved with their local NHF chapter to connect with other families affected by these conditions.
In addition, through Unite Your Way, supporters may get involved with fundraising efforts that include Run Red, a virtual event to benefit the NHF. Throughout the end of this month, participants may run or walk at the time or place of their choosing.
“Your generous support helps us deliver on our promise to serve every person in our community until we live in a world without bleeding disorders,” the NHF states in an Awareness Month announcement. “We can do this by identifying gaps in the care our community receives, and better understanding how variables like race, sex, and income can determine access to care, and more importantly, outcomes of care.”
Elsewhere, the Hemophilia Federation of America (HFA) is posting on Facebook a fact about bleeding disorders every day of this month, and is offering advocacy tips and downloadable hemophilia and von Willebrand educational cards. The HFA is also asking community members to complete a survey aimed at better understanding the disparities and inequities in bleeding disorders.
Between 30,o00 and 33,000 people in the U.S. are thought to live with hemophilia. The most common bleeding disorder is von Willebrand, which affects about 1 in every 100 people.
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