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    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
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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

A smiling female nurse with a stethoscope around her neck, standing with arms crossed, in a medical setting with other healthcare professionals in the background.

Knowledgeable health professionals

Doctor in white coat talking to patient and holding their hand during consultation.

Timely Diagnosis

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

A nurse holding a patient's hand while she lies in a hospital bed, looking at the nurse.

Effective treatments and appropriate care

need urgent care? emergency porphyria support is Available

Click below if you need urgent porphyria help:

emergency porphyria support