The Global Porphyria Advocacy Coalition is made up of porphyria patient groups from around the world, representing all types of porphyria. Together we are changing the world for porphyria.

Porphyria is more than just a list of symptoms.

These are our stories.

On 18 May 2026, join fellow members of the porphyria community from across the globe to raise awareness of porphyria.

Real voices. Real stories. Real connection.

Global Porphyria Voices is a brand-new video series from GPAC that brings together people across the porphyria community whether that be patients, caregivers, advocates or researchers for genuine conversations. Each episode features two people sharing their unique stories, perspectives and lived experiences in a relaxed and simply authentic way.