Disappointed by the FDA’s ruling on an investigational EPP treatment

ADVOCACY

Mar 3

Porphyria News | March 3, 2026

A patient-voice commentary piece reflecting on the FDA decision and why the community remains hopeful while facing the emotional reality of the delay.

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Anna Mann

Disappointed by the FDA’s ruling on an investigational EPP treatment

Two local women share life with rare sun condition, urge continued drug development

A patient-driven effort led by the EPP/XLP Committee for the Approval of Bitopertin.

A patient-driven effort led by the
EPP/XLP Committee for the Approval of Bitopertin.