This year, Porphyria Awareness Week (PAW) will align with Global Porphyria Day for a united, worldwide effort to raise awareness. Together with our global partners in the Global Porphyria Advocacy Coalition (GPAC), we’re excited to join forces to shine a brighter light on porphyria. PAW 2025 begins May 12 culminating in Global Porphyria Day on May 18.
Throughout the week, the American Porphyria Foundation (APF) will host a variety of activities—but the most impactful efforts are those organized by you, our porphyria community. Patients know firsthand what it means to live with this condition, and their voices are key to raising awareness and driving change.
This year’s theme is THINK PORPHYRIA . We can help our medical teams remember to THINK PORPHYRIA when they are confronted with the porphyria symptoms.
The PAW agenda is an exciting one that will reach the medical community and the public:
Monday, May 12
- HAT DAY: Families, friends, patients, caretakers wear hats in support of those with photosensitive forms of porphyria, such as EPP, XLP, CEP, PCT, VP and HCP. You can ask your school to participate and have the porphyria student with porphyria gives a short presentation to raise awareness among their classmates.
Tuesday, May 13
- WEAR PURPLE DAY: A simple yet effective way to spark conversations about porphyria is to wear purple. Some women have even painted their nails purple. Explain that Porphyria comes from the greek word , porphyrus, meaning Purple because of the strage purplish urine that can occur.
Wednesday, May 14
- PORPHYRIA PET DAY Post your pets in their porphyria bandanas or with an APF logo , or just share your pets. We porphyria people are pet lovers.
Thursday, May 15
- SHARE YOUR STORY DAY Patients and Caretrakers, please post your photo, type of porphyria and your experience with porphyria. Your story is the most important and effective way of giving hope to others and illuminating their lives with new friendships.
Friday, May 16
- LIGHT THE SKY PURPLE: Spearheaded by Kelly Burns, a Canadian VP patient, this campaign has illuminated iconic landmarks across Canada and the U.S. in purple light to honor porphyria patients. Imagine a future where the whole world lights the sky purple—Kelly’s dream can become a reality with your help! Ask your neighbors and friends to put a purple light in their windows, or businesses to light their stores. Better yet, ask your community heads to light their bridges !!! Light up the world for porphyria
Saturday, May 17
- APF PODCAST Host Andrew McManoman and guest , Mike Boone, who will share his amazing acute porphyria journey as a research patient and one on both Panhematin and Givlaari to quell the horrific attacks . He will share , also , his most resent cancer battle and the way he keeps porphyria at bay.
Sunday, May 18
- GLOBAL PORPHYRIA DAY and SATISFY THE SOUL SUNDAY Join your friends around the world who also have porphyria as they share their lives and stories of hope. Enjoy comfort and peace on Satisfy the Soul Sunday.
