Luke Runion: Closing a Chapter with HFA While Continuing the Mission
Luke Runion, Federal Client Executive, Associate Director at EY, shared a post on LinkedIn:
“Last month, I had the privilege of attending the 32nd annual Hemophilia Federation of America (HFA) Symposium in New Orleans – an event that continues to make a meaningful difference for families like mine.
The Symposium brings the bleeding disorders community together to share the latest in education, policy, and innovation supporting those living with bleeding disorders.
It’s a powerful reminder of how far the community has come – and how important it is to keep pushing forward.
This year’s event was especially meaningful for me personally, as it marked the close of a chapter in my own journey with HFA.
After several years of service on the Board, I’ve transitioned into the Past Chair role.
I’m incredibly grateful for the opportunity to help lead such an impactful organization and to work alongside a truly dedicated group of leaders.
HFA’s mission is rooted in a history that should never be forgotten, hence its motto, ‘Lest we forget’.
The organization was born out of crisis during the AIDS epidemic, when contaminated blood products devastated the bleeding disorders community – tragically taking the lives of the vast majority of individuals with hemophilia who were exposed.
Advocacy efforts led by community leaders brought critical transparency to light, ultimately helping drive legislative action, including the Ricky Ray Hemophilia Relief Act of 1998.
That law established a $750M fund to provide compassionate payments to individuals infected with HIV through the blood supply – a lasting example of what determined advocacy can achieve.
Today, HFA is led by patients, parents, and allies who continue that mission – working to ensure that people with bleeding disorders don’t just manage, but truly thrive.
Because of the courage and persistence of those who came before us, patients now have access to safe and effective treatments.
At the same time, the work is far from done.
People with bleeding disorders continue to fight for access to care and greater health equity across an increasingly complex and evolving healthcare landscape.
One of the accomplishments I’m most proud of during my time on the Board was helping to develop HFA’s Voice of the Community program – a national initiative designed with the Institute for the Future to give the community a direct voice in shaping the future.
By elevating patient and family perspectives, identifying challenges, and envisioning solutions, this effort is helping inform care, support, and policy priorities for the next decade.
Reflecting on both the history and the momentum of this community reinforces why HFA’s work remains so essential.
Grateful for the opportunity to serve, the people I’ve met along the way, and the impact we continue to make together.”
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