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FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice
Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome (SDS PFDD meeting) successfully delivers patient voice to the FDA, drug developers, and other stakeholder.


Reflections from Cincinnati 2025 and impact of the patient voice
Our reflections. Cincinnati hosted two key events for SDS in June 2025: the SDS PFDD meeting and the International Scientific Congress on Shwachman-Diamond Syndrome


SDS Patient LENS Study Now Open
Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,
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