On this episode of Soundbites of the Annual Meeting, we talked to Kimberly Haugstad, CEO of RareRising and a longtime rare disease advocate who is also the parent of a child with severe hemophilia.
In her conversation with ASGCT's Communications Committee Chair, Lynnea Olivarez, Kimberly discusses:
- why patients, as the "lived experience experts" are so important to rare disease communications
-
advice for scientists who would like to engage more directly with patient communities
- what's giving her hope right now
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