The reality of porphyria is so much more than a list of symptoms. As patients we have no choice but to find our own words to explain the devastating effects this condition can have on our lives.

The #MyPorphyria campaign uses patients' own words to raise awareness and understanding of these rare diseases.

Participate in #MyPorphyria

  • Download the Toolkit

    Learn how you can get involved in the campaign, find sample messaging and download graphics.

    Get toolkit

  • Share your own #MyPorphyria experience

    Get your printable or editable graphics. Post on social media with the hashtag #MyPorphyria.

    Get my template
  • Picture of porphyria patients

    Watch porphyria stories

    Hear the diverse experiences of porphyria patients around the world .

    Watch

Campaign Videos

Share the stories of patients from around the world explaining porphyria in their own words. Videos highlighting specific porphyrias will be released leading up to Global Porphyria Day on May 18

Introducing #MyPorphyria

Erythropoietic Protoporphyria & X-Linked Protoporphyria

Hereditary Coproporphyria & Variegate Porphyria

Acute Intermittent Porphyria

Share your experience

Create your #MyPorphyria post using the templates below and post to social media using the #MyPorphyria hashtag and tagging @GlobalPorphyria and your patient organization.

Editable templates

Printable templates

DownLoad your toolkit

Download the toolkit for:

  • More information on the campaign

  • Sample post content

  • Access access to links and graphics

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