ONE THING ABOUT
PORPHYRIA…
Awareness Toolkit for Global Porphyria Day
What is one thing you wish others understood about porphyria?
This Global Porphyria Day, help health professionals, friends, family, colleagues and classmates understand the realities of porphyria.
Share your answer to the prompt: “Something I wish you understood about porphyria…” and share it on social media with the hashtag #OneThingPorphyria.
Here’s how you can participate:
Find Your Answer to the Prompt
If there was one thing you wish more people understood about porphyria, what would it be?
Topic ideas:
What is invisible about your porphyria?
What are the impacts of porphyria beyond the physical symptoms?
What do medical professionals have a hard time believing?
What is something that would make a big difference in your life?
Create Your Post
Share your answer in the format that feels most comfortable to you:
Record a 10-20 second video
Use a Canva template to add a picture and answer
Use a pre-made graphic and add your caption to the image
Print off a template, fill and take a picture with your sign
Share Your #OneThingPorphyria
Share your post with your friends, family and broader social network!
Use the hashtag #OneThingPorphyria and we’ll add it to our Global Porphyria Day gallery!
Remember to like, comment and share other posts that resonate with you!
Let’s make sure porphyria is impossible to ignore.