• Working together for porphyria, everywhere

    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.

    Find your porphyria organisation

  • #myporphyria campaign

    Porphyria is more than just a list of symptoms.

    These are our stories.

    Learn more

La Base de Datos de Medicamentos Seguros para Porfiria de Napos ahora está disponible en Español. Consulta si un medicamento es seguro, riesgoso o requiere supervisión especializada.

Una herramienta creada para pacientes, médicos y cuidadores.

Ahora disponible en Español.

Consulta la base de datos aquí

About Porphyria

A group of 8 rare disorders related to how your body makes an important molecule called heme.

While different types of porphyria have very different symptoms, from extremely painful sensitivity to visible light to severe abdominal pain, we have many challenges in common.

global porphyria priorities

Knowledgeable health professionals

Timely Diagnosis

Bringing voices together to build collective empowerment, led by national groups

Effective treatments and appropriate care

need urgent care? emergency porphyria support is Available

Click below if you need urgent porphyria help:

emergency porphyria support