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

  • Campaign toolkit for the #MyPorphyria awareness campaign, including details on launch, content ideas, and how to participate, with a smiling woman holding a brochure.

    Download the Toolkit

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

    Get toolkit
  • An informational graphic about myopia, featuring a bold hashtag #myopia, a section for a doctor's statement, a section for a comparison, and a logo with a link to myporphyria.org for more information.

    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

Congenital Erythropoietic 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

Infographic explaining erythropoietic protoporphyria, showing that Wikipedia says it is skin photosensitivity, but it feels like lava or fire on skin, with a link to myporphyria.org.

Printable templates

A woman with curly brown hair smiling and holding a sign that reads 'I have Variegate Porphyria (VP). WebMD says Fatigue, but it's more like Brain Fog and Total Exhaustion. This is #myporphyria.'

DownLoad your toolkit

A campaign toolkit document for the #MyPorphyria awareness campaign, outlining details of the campaign launch, activities, and ideas for involvement, including sharing videos, posts, and stories on social media platforms.

Download the toolkit for:

  • More information on the campaign

  • Sample post content

  • Access access to links and graphics

Download

Thank you to our sponsors

Logo of Alyam, featuring a stylized blue and white swan or bird next to the word 'Alyam' in blue text.
2024 recipient badge for the #RAREis Global Advocate Grant, featuring a globe with a yellow ribbon saying 'RECIPIENT,' and a logo for the #RAREis program by Amgen in the bottom right corner.
Logo of Portal with a stylized hexagon icon and the word 'Portal' in gray text.
Mitsubishi Tanabe Pharma logo with blue graphic and gray company name.
The logo for Disney Medicine with the word 'disney' in lowercase red letters and a stylized red smiley face curve, with 'medicine' written below in smaller red font.