Global Porphyria Day 2023
This year the global porphyria community will be engaging in Global Porphyria Day on Wednesday 19 April 2023. Previously known as Porphyria Awareness Week, this wonderful international event provides you with the opportunity to raise awareness about porphyria and get involved in Global Porphyria Day.
Porphyria is so much more than a list of symptoms. This year on Global Porphyria Day, we’re joining partners from around the world to launch the #MyPorphyria awareness campaign. The campaign aims to promote recognition and understanding of porphyria by highlighting and centring patients’ own descriptions of their porphyria.
As part of the campaign, the Global Porphyria Advocacy Coalition (GPAC) will be launching a series of porphyria/condition specific videos, with the first being premiered on GPD and the remaining videos being shared in the coming weeks and months.
Each video will focus on a number of patients and contrast how porphyria symptoms are often described in medical terms that fail to capture the realities of living with porphyria.
The first video is available to watch here:
Get Involved with GPD 2023
SHARE YOUR STORY
On Wednesday 19 April, use the hashtag #MyPorphyria on social media to 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?
SHARE OTHER PATIENT STORIES
You can also share the videos and stories we will be posting on social media throughout the week, and catch up on patient stories from previous awareness events on our website.
PURPLE FOR PORPHYRIA
Show your colours by wearing purple to raise awareness of porphyria. Share photos of your fabulous purple outfits on social media using the hashtag #PurpleForPorphyria and help us colour the globe purple!
Here are a couple of other easy ideas for raising awareness and funds in your local community:
- 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.
- 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?
You can make a donation to the BPA, or encourage friends and family to do so. Any support you can offer will enable us to keep doing the work we do to support people with porphyria – we appreciate your financial contribution no matter what the size.
More resources for getting involved with #GPD2023 can be found on the GPAC website.