Global Porphyria Day 2026

Global Porphyria Day (GPD) is a day where the international porphyria community comes together to raise awareness of porphyria and rare disease in our local communities.

It takes place each year on 18 May and is coordinated by the Global Porphyria Advocacy Coalition (GPAC), an umbrella organization for national porphyria patient advocacy organisations across the world.

Read on to find out more about GPAC’s Global Porphyria Day campaign and how you can get involved on Monday 18 May 2026. Whether you’re an individual, an organization or part of a wider community, every action helps raise awareness and visibility for porphyria worldwide!

JOIN THE GLOBAL CHAIN OF LIGHTS

Each year, landmarks around the globe light up purple to raise awareness, engagement and support for the porphyria community. Through this shared effort, we foster greater visibility and meaningful connections for all who are touched by porphyria. Purple is the internationally recognised colour of porphyria, as the condition is named from the ancient Greek word porphyrus, meaning purple.

The BPA has arranged for several landmarks across the UK to #LightUpForPorphyria in purple on Monday 18 May as part of this global campaign – is your local landmark on the list? If you can spot one near you on the map below, why not pop down there at sunset to take a picture and tag us in it on Facebook or Instagram!

  • Bristol City Hall, Bristol
  • Ashton Gate Stadium, Bristol
  • St Edmundsbury Cathedral, Bury St Edmunds
  • Chester Town Hall, Chester
  • Eastgate Clock, Chester
  • Newgate Arch, Chester
  • The Deep Aquarium, Hull
  • Lancaster Castle, Lancaster
  • Tower 42, London
  • Gateshead Millennium Bridge, Newcastle
  • Chantry Place Shopping Centre, Norwich
  • Nottingham Council House, Nottingham
  • Rochester Cathedral, Rochester
  • The Guildhall Worcester, Worcester
  • York City Walls, York
  • Wallace Tower, Ayr, Scotland
  • Dumfries and Galloway Council Headquarters, Dumfries, Scotland
  • Camera Obscura & World of Illusions Museum, Edinburgh, Scotland
  • Stumpy Tower (also known as Girvan Steeple), Girvan, Scotland
  • Perth Bridge (also known as Smeaton’s Bridge), Perth, Scotland
  • St Paul’s Church, Perth, Scotland
  • The Tower of Refuge and Ramsay Swing Bridge, Douglas, Isle of Man

Want to add your local landmark to the list? Download GPAC’s Light Up Toolkit to find out how to contact your local landmarks and request them to be lit up in purple.

WEAR PURPLE FOR PORPHYRIA

Lana (left) and Riya (right) at a Wear Purple For Porphyria Day they organised at their school in 2024.

You can also help us turn the world purple on Global Porphyria Day by wearing purple and sharing photos of your fabulous outfits on social media using the hashtag #PurpleForPorphyria and #GlobalPorphyriaDay, and tagging us on Facebook or Instagram.

Another option to get your whole community involved could be to organise a Wear Purple for Porphyria Day at your school, workplace, or other community space.

It couldn’t be easier to get started: just pick a day on or around Global Porphyria Day (18 May)ask everyone to wear an item of purple clothing and bring in a £1 donation on that day, then send the funds raised over to us! We’ve even created handy how-to guides and promotional posters on our website to help you put together the event.

SHARE YOUR STORY

Tell us about your lived experience of porphyria, in your own words. How are you affected? What would you tell other people? What do doctors/text books say and what is it really like for you? Why do you feel it’s important to raise awareness of porphyria? What does being part of the porphyria community mean to you?

Use the hashtag #SpeakWithGlobalPorphyria to share your story on social media, or contact GPAC at admin@gpac-porphyria.org and they would be delighted to help you share your story.

You can also share the patient stories and videos GPAC will be posting on Facebook and Instagram to help raise awareness.

Visit the Global Porphyria Advocacy Coalition (GPAC) website to browse more resources and information on how to get involved in Global Porphyria Day 2026.