Join the global porphyria community to raise awareness about Porphyria
happy global porphyria Day 2025!
In honour of Global Porphyria Day 2025, we're proud to launch a powerful new video featuring voices from around the world! 🌍💜
In this heartfelt film, members from some of our incredible Porphyria Advocacy Groups share why they dedicate their time, energy and passion to advocating for those affected by porphyria. They work to raise awareness, support families, advocate for better care and create global connections to improve the lives of those affected by porphyria and we couldn't be more grateful!
Thank you to E.P.P. Patient Association Belgium, British Porphyria Association, Associação Brasileira de Porfiria, Canadian Association for Porphyria, Fundación Porfiria Chile, Asociación Latinoamericana para las Porfirias, Association Française des Malades Atteints de Porphyries, EPP Selbsthilfe, Sociedad Mexicana para Porfiria, National Association of Porphyrias Serbia, Schweizerischen Gesellschaft für Porphyrie, Türkiye Porfiri Derneği, United Porphyrias Association 💜
Watch now! 👇
global porphyria day 2025 shareable assets
Turn Purple for Porphyria
On May 18, join us in turning the world purple for porphyria:
Wear purple and encourage your friends, coworkers and classmates to join in too!
Approach local landmarks about turning purple (sample request letter). Check out this listing for landmarks in your area.
Create a #PurpleforPorphyria fundraising campaign for your national porphyria organization.
2. Let others know it’s Global Porphyria DAy
Update your social media headers for Global Porphyria Day and your profile picture with a frame
Send out a save the date to your networks
Create and share your #MyPorphyria story, and encourage others to participate
Wear #PurpleforPorphyria and encourage others to get involved!
3. Join the #myPorphyria campaign
Share your #MyPorphyria experience using the campaign graphics using the hashtag #MyPorphyria and tagging @GlobalPorphyria
Share campaign videos
