Bleeding Disorders Awareness Month kicks off in March
NBDF, HFA, and others providing education, activities to mark event
March is Bleeding Disorders Awareness Month (BDAM) and patients, caregivers, advocates, and other supporters are coming together to call attention to conditions like hemophilia and von Willebrand disease that impact more than 3 million people in the U.S.
Bleeding disorders are marked by uncontrolled bleeding that occurs from a lack of proper blood clotting. As a result, simple cuts, physical trauma, or surgeries can lead to serious health consequences for those affected.
BDAM has been held each March since 2016 and is an opportunity for patients and families with the disorders to learn, network, and share their stories. They can also participate in fundraising and advocacy events to influence local and/or national policymakers.
The National Bleeding Disorder Foundation (NBDF), formerly the National Hemophilia Foundation (NHF), is dedicated to finding cures for inheritable blood and bleeding disorders and focuses on educating, researching, and advocating for patients and their families.
“Each March, Bleeding Disorders Awareness Month is an important opportunity to raise awareness of the diverse lived experiences within the inheritable blood and bleeding disorders community. We invite individuals and families with hemophilia, von Willebrand disease, rare factor disorders, and more, to share their unique stories, struggles, and successes,” Phil Gattone, NBDF’s president and CEO, said in an email to Hemophilia News Today. “Together, by sharing experiences, we will break down barriers to better health and equity, and create resilient, inclusive communities where everyone can thrive.”
Activities abound for BDAM
As in past years, NDBF invites patients and families to Start the Conversation around issues and experiences about inheritable blood or bleeding disorders. Families are encouraged to talk about their history, genetics, and the genetic counseling they received at their diagnosis. Topics can also include research, treatments, mental health, medical marijuana, school issues, and more.
On March 6-8, NDBF will host Washington Days at the Hyatt Regency Washington on Capitol Hill to give those impacted by inherited blood disorders a chance to meet with legislators and advocate for issues that are important to them, such as federal funding for programs and policies to improve affordability and access to care.
Also, the fully virtual Run Red 2024 event happening from March 1 to April 30 invites supporters to participate in either a 5K, a full-marathon (26.2 miles), half-marathon (13.1 miles) or fun run/walk of any distance. The entry fee is $25 a person or $35 a family, up to four family members and $5 for each additional person. The NBDF hopes to raise $15,000 for the event.
Other ways to take action include registering to vote, starting a grassroots advocacy campaign, writing to a local newspaper, or donating to NBDF. Supporters are also encouraged to become familiar with NBDF’s community resources, which include the opportunity to write a social worker via email at [email protected]. Their reply may appear in a future publication.
The 76th Annual Bleeding Disorders Conference (BDC) will take place September 12-14 in Atlanta at the Georgia World Congress Center. The event includes a Kids program for children ages 12 and younger. Registration fees start at $105 for adults.
Every year, NBDF recognizes notable community members or health care professionals with its Awards of Excellence at BDC. Nominations must be received by May 3, 11:59 p.m. EST.
HFA provides listening and learning opportunities
The Hemophilia Federation of America (HFA), which has served the bleeding disorders community for 30 years, will hold its Improving Minority Participation and Advocacy in Clinical Treatment (IMPACT) workshop on March 15, 19, and 26.
The three-day workshop will focus on training hemophilia treatment centers and HFA member organizations about promoting equity in treatment practices to overcome barriers to diversity in clinical trials.
The organization is also offering downloadable graphics in English and Spanish to share on Facebook, Instagram, and X. Supporters are encouraged to include the hashtags #BleedingDisordersAwarenessMonth, #bleedingdisorders, and #HFA with their posts.
The annual HFA Symposium will be held April 11-13 at the JW Marrriot, Indianapolis. The event includes sessions on dental care, pain, navigating college, and gene therapy. Registration for members is $55. Hotel scholarships are available to help defray attendance costs.
Local events
Several HFA chapters are participating in BDAM. Hemophilia of Georgia will host its Score Fore a Cure event on March 7, 7-10 p.m., at Topgolf, 10900 Westside Parkway, Alpharetta, Georgia. Corporate sponsoring, exhibit opportunities, donations, and ticket purchases can all be completed on its website.
The Virginia Hemophilia Foundation (VHF) will host community events at Topgolf in Virginia Beach and Richmond on March 2 and 3, respectively. The events run from 11 a.m. to 2 p.m. Lunch and two hours of golf will be provided free of charge.
The VHF will also host BDAM dinners in Virginia Beach and Roanoke on March 13 and 14, respectively. The events are free to attend, but limited to VHF constituents and their families. There will be food, education, and community-building at both dinners. The Virginia Beach event, which will include bowling, is part of a collaboration with staff at Children’s Hospital of The King’s Daughters.
The Bleeding Disorders Association of South Carolina offers several ways to get involved in BDAM, including wearing red on Saint Patrick’s Day, attending proclamation celebrations, and donating and advocating as part of its Red Tie Campaign. The organization will also host its Adult Connection Symposium for men, women, and couples affected by bleeding disorders. The symposium is scheduled for March 22-24 in Greenville.
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