Patient and Caregiver Perspectives from the 2023 NORD Breakthrough Summit
We asked those impacted by rare disease to share their experiences and takeaways from the summit.
By Eric Monticello
It’s often said that rare diseases aren’t that rare. And the National Organization for Rare Diseases (NORD) Breakthrough Summit gives patients a chance to see that for themselves.
This year, 900 rare disease community members came together in person to network, share stories and gather information about thousands of rare conditions. CSL, whose medicines treat rare
diseases, attended the summit and shared information about bleeding disorders and policy changes that could benefit the patient community.
What did attendees representing various rare disease communities take away from the summit? We interviewed them to find out.
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