Deborah Ebert Long on Hemophilia Care: Progress, Possibility, and the Power of Listening
Deborah Ebert Long, Senior Vice President, Medical Affairs at CSL, shared on LinkedIn:
”Hemophilia Care: Progress, Possibility, and the Power of Listening
I am pleased to share reflections on one of the most inspiring journeys in rare disease care—hemophilia.
As the head of Medical Affairs at CSL, I see every day how science continues to redefine what’s possible for people living with rare diseases.
In hemophilia, the progress has been extraordinary, from uncertainty of frequent bleeds and transfusions to enabling proactive management.
Factor replacement therapies changed the game, and extended half-life therapies built on that progress, offering even greater freedom and protection.
Each advance reflects decades of research, collaboration, and advocacy.
Now, science is opening a new chapter: gene therapy.
Instead of relying on replacement therapies, gene therapy aims to restore the body’s ability to make the protein missing in people living with Hemophilia B, addressing the underlying genetic cause of the disease.
It’s a shift in how we think about what’s possible.
But with innovation comes complexity—questions about access, education, and support.
At CSL, our commitment remains clear: to advance science in ways that are meaningful and sustainable for the people we serve.
Here are three principles shaping how we move forward.
1. Fostering Dialogue—Thoughtfully
Progress begins with listening. When patients, clinicians, and advocates share their perspectives, solutions become more inclusive and enduring.
2. Communicating—Openly
Change brings questions. Transparent, consistent communication builds trust and confidence as new therapies emerge.
3. Collaborating—Relentlessly
Every step forward in hemophilia care is the result of partnership—between researchers, advocates, and the community itself.
The future of hemophilia care is bright and still unfolding.
Together, we can ensure it’s defined not only by innovation, but by empathy, integrity, and hope.
It’s a privilege to be part of this journey.
Learn more about the latest data shaping this next chapter.”
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