Porphyria Awareness Week 2022

Porphyria Awareness Week is a week-long international campaign for porphyria awareness. It is held in April each year and has a slightly different theme every year. Check out our 2021 and 2020 campaigns and let us introduce you to the 2022 campaign #PorphyriaTogether.

Join the BPA in Porphyria Awareness Week (PAW)

PAW 2022 aims to engage the whole international porphyria community in raising awareness this year with a real focus on #PorphyriaTogether. The BPA are setting three exciting ways in which patients, families and friends can get involved (more details to follow)!

Save the date and starting planning!  #PorphyriaTogether   #PAW2022    #PurpleForPorphyria     #Tell15

Capture your porphyria: Can you sum up porphyria in one image?

The BPA plan to generate a visual collage of ‘porphyria’ made up of as many ‘captures’ as possible! The plan is to share this visual representation later in the year!

How would you capture this in one image? Would you focus on pain, treatments, your family or something completely different? We can’t wait to see how you will ‘capture your porphyria’!  Email pictures to: helpline@porphyria.org.uk by 09:00 on Sat 9 April 2022.

Purple for porphyria – Friday 8 April 2022 #PurpleForPorphyria

Let’s join together to colour the globe Purple For Porphyria. Why not help us raise awareness and funds for the BPA? You could choose one of the following #PurpleForPorphyria options that are easy to organise at work/school.

• • Wear purple for porphyria. Get your children and their school and/or your workplace/friends/community or even your local hospital involved in Purple for porphyria. If the Friday won’t work, choose any day of PAW!
  • Wear purple for porphyria and ask for a donation. Why not ask for small donations from work colleagues/school children to wear purple and raise some funds for the BPA too?

Raise awareness: #Tell15

Could you #Tell15 people about porphyria? Or could you go a step further? You could show one of three amazing documentaries (all aimed at different audiences: one on children and EPP, one on the acute porphyrias and one on EPP for adults) in school/work to really help raise awareness and get people talking – these documentaries really demonstrate the impact of porphyria on patients and their families.  Could you organise a porphyria film viewing?