He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition

ADVOCACY

Feb 3

People | February 2026

Craig Leppert shares his experience living with EPP, founding Shadow Jumpers, and what bitopertin has meant for people with this painful rare disease. The story helps bring the human side of EPP and treatment access into clear view.

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Anna Mann

He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition

US FDA declines to approve Disc Medicine’s rare disease drug

FDA Rare Disease Innovation Hub Strategic Agenda

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.