A Message From The President and CEO of the National Bleeding Disorders Foundation (NBDF)
Dear NBDF Community,
Yesterday, the landscape of public health shifted in ways that deeply affect the bleeding disorders community. As part of a broader restructuring at the U.S. Department of Health and Human Services (HHS), nearly all staff within the CDC’s Division of Blood Disorders and Public Health Genomics were placed on administrative leave, with terminations expected in the coming weeks. This includes experts who have been steadfast partners in our shared mission—professionals whose dedication has strengthened our community through vital research, public health programs, and data collection efforts.
We are profoundly grateful for their years of partnership and commitment, and we are deeply concerned about what impact these changes may have on our community. While we are still gathering information, we know that the ripple effects could extend to critical grant programs that support patient organizations, including NBDF and our chapters across the country, Hemophilia Treatment Centers, and critical research initiatives. We also understand that reductions have affected the hemophilia program at HRSA, though some staff remain, and we are hopeful that its essential work will continue.
At NBDF, we are moving swiftly. We are working alongside coalition partners, engaging with bipartisan Congressional champions, and making it clear that these programs must be protected. We have seen the power of collective action reverse other recent federal restructuring efforts, and we know that when our community comes together, our collective voice is powerful, and we can make a profound difference together.
In the coming days, we will share a clear call to action. We will need your voices, your advocacy, your participation, and your leadership to ensure that the vital programs serving the bleeding disorders community remain strong. This is not a time to remain on the sidelines. It’s time for all of us to come together with strength and unity and carry forward the advocacy that represents the essence of who we are as a community.
Thank you for all that you do. More to come very soon.
More details on the “Transformation to Make America Healthy Again” plan released on March 27th from HHS Secretary Kennedy can be found in this press release and this fact sheet.
How You Can Help
In the coming days, we’ll share specific ways you can take action. We’ll need everyone in our community to step up:
• Share your stories
• Contact your representatives
• Join our advocacy efforts
• Spread the word in your local bleeding disorders community
With urgency and gratitude,
Phil Gattone
President & CEO
National Bleeding Disorders Foundation
