Porphyria Awareness Week is an international campaign that many countries around the world embark upon. It is held in April each year and has a slightly different theme every year.

This year, the international porphyria community are facing and trying to adapt to a completely new way of living, working and educating our children in this new world that we are all facing!

In the UK and Ireland, we plan to continue our efforts to raise awareness in an adapted way (something that us porphyria patients are all well equipped for) by bringing the porphyria community together across social media platforms!

The aim is to ensure that porphyria patients feel less isolated and interact more with each other as people may be feeling all the more isolated than normal!

8 Days of Porphyria – Share Your Stories 10 – 17 April

Keep an eye on social media for patient stories from all different porphyria types.


Our main porphyria awareness week comprises our bRed4Porphyria campaign: There will be a different activity for each day that people will take pictures of and share via social media.Pictures must be uploaded by 17:30, ready for the vote opening at 18:00.

Between 18:00 and 20:00 there will be a poll/vote for the best picture from the day. Winners for each day will be announced on Sat 25 April – each will win a £10.00 Amazon voucher