NHF, Others Rally Attention to Bleeding Disorders for Awareness Month
People nationwide are marking Bleeding Disorders Awareness Month, set aside each March, to call attention to disorders such as hemophilia and von Willebrand disease, and the more than 3 million U.S. residents thought to be living with them.
Across the U.S., patients, caregivers, and activists are running and walking to raise funds, securing government proclamations, starting “conversations,” submitting videos, and snapping selfies — all to enhance awareness and support for those with a bleeding disorder.
Because these disorders stop blood from clotting normally, surgery, injury, or physical trauma can result in protracted and uncontrolled bleeding. At times, bleeding starts with no apparent cause.
Bleeding Disorders Awareness Month, which has been observed since 2016, aims to broaden awareness among the general public, lawmakers, public agencies, researchers, industry representatives, and healthcare professionals.
The event is organized by the National Hemophilia Foundation (NHF), which offers several ways to participate.
“Inheritable blood disorders are often excluded from the national conversation around medical priorities,” Len Valentino, MD, the foundation’s CEO, said in a statement to Hemophilia News Today.
“This campaign hopes to kickstart bringing disorders like hemophilia, von Willebrand disease, rare factor deficiencies, and others, to the forefront of issues that are common across disease states, like mental health for chronic disorders, accessibility and affordability of medications, the impacts of the COVID-19 pandemic, and more,” Valentino said.
“With ‘Start the Conversation,’ our community will be able to share what is of utmost importance to them and their families,” he added.
“Start the Conversation” is a new campaign by the NHF, a leading patient advocacy organization for the inheritable blood and bleeding disorders community. The initiative, which will run throughout March, aims to showcase a broad range of experiences across disease states, research, education, and advocacy.
It invites supporters, community members, and healthcare providers to use Awareness Month to spark discussions that bring attention to the community’s most pressing questions, issues, and needs.
A virtual community dialogue, taking place primarily across the NHF’s social media platforms, will offer facts and resources helping to dispel common misconceptions about inheritable blood disorders.
Participants can take a selfie in the NHF virtual photo booth, submit a video of what their conversation will be about, and post a photo with their conversation topic.
The foundation is also reprising its Run Red awareness and fundraising event — this year’s goal is to raise $15,000 — for the nonprofit organization. Because the monthlong run or walk is virtual, supporters can participate however, wherever, and whenever they choose. For instance, participants may run or walk a 5K, half-marathon, or full marathon, or log miles on their treadmill or local trail.
People can also track the miles they walk or run throughout the month and set their own personal goal by using the Charity Miles app, which can be downloaded here. The foundation encourages participants to upload photos and share them on social media using the hashtags #NHFGO and #RunRed.
Run Red registration fees are $25 for individuals and $35 for families with up to four participating members. There will be a $5 charge for each additional member. A $5 discount will be given those who sign up by Feb. 28. Included in the registration fee is access to NHF’s Run Red 2022 Spotify Playlist, which contains dozens of handpicked tunes to get people in a running or walking state of mind.
Likewise, the Hemophilia Federation of America offers ways to participate, including swapping out Facebook cover and profile images, hosting fundraisers, and downloading and sharing educational cards about hemophilia and von Willebrand disease. The organization also asks supporters to participate in its fact-a-day social media campaign about bleeding disorders.
The Bleeding Disorders Association of South Carolina has garnered state and city proclamations declaring March to be Bleeding Disorders Awareness Month. The Hemophilia Foundation of Northern California offers guidance for getting Awareness Month declarations in area municipalities. California, meanwhile, has a bill before its state Senate for such a declaration.
For its part, the Virginia Hemophilia Foundation is again using the month to raise funds — at least $2,000 this year — for its scholarship program. It’s also asking supporters to help spread awareness by sharing the organization’s Facebook posts throughout March, or by launching a Facebook fundraiser to benefit the bleeding disorders community.
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