Campaign highlights patient responses to “One thing I wish you understood about porphyria”
BETHESDA, MD, UNITED STATES, May 13, 2026 /EINPresswire.com/ — The United Porphyrias Association (UPA) is marking Global Porphyria Day 2026 on May 18 by focusing on the hidden realities of porphyria with the theme “One Thing I Wish You Understood About Porphyria…”.
Global Porphyria Day is observed annually on May 18 to raise awareness of porphyria, a family of eight rare and often misunderstood genetic conditions that can profoundly impact daily life. Through this year’s campaign, UPA is amplifying the voices of community to share honest reflections about the realities of porphyria and the challenges that are often unseen by others.
Porphyria symptoms vary by type and can include severe pain, extreme sensitivity to sunlight, neurological complications, chronic fatigue, mental health challenges, and unpredictable attacks that disrupt work, school, relationships, and everyday activities. Because porphyria is rare and symptoms are frequently invisible, patients often face long delays in diagnosis, stigma, misunderstanding, and isolation.
“This campaign creates space for members of the porphyria community to share the realities behind the disease in their own words,” said Kristen Wheeden, UPA President. “By listening to and learning from these experiences, we can build greater awareness, compassion, and support for everyone affected by porphyria.”
The UPA is encouraging supporters around the world to participate by sharing their own reflections using the prompt “One Thing I Wish You Understood About Porphyria…” and helping spread awareness on social media using the hashtags #OneThingPorphyria, #GlobalPorphyriaDay and #PorphyriaAwareness.
UPA also hopes the campaign will encourage earlier recognition and diagnosis of porphyria, improved access to care, expanded research efforts, and stronger support systems for patients and families worldwide.
“Awareness begins with understanding,” said Wheeden. “Every story shared helps shine a light on the realities of porphyria and reminds people living with these conditions that they are not alone.”
Global Porphyria Day is a worldwide effort dedicated to increasing awareness and understanding of porphyria. Additional 2026 awareness activities include an international art challenge, the “Light Up Purple” campaign encouraging communities to wear purple and illuminate landmarks, and a livestream discussion featuring porphyria expert Bruce Wang of University of California, San Francisco. To learn more about Global Porphyria Day 2026, access educational resources, or get involved, visit United Porphyrias Association.
About the United Porphyrias Association
The United Porphyrias Association is a nonprofit organization dedicated to improving the quality of life for people living with all types of porphyria. UPA advances disease awareness, research, education, advocacy, and access to care through close collaboration with the global porphyria community. Ou name reflects the belief that meaningful progress takes a united effort. Patients, caregivers, clinicians, researchers, industry partners, regulatory leaders, and advocates all play a vital role in improving patients’ lives.
Kristen Wheeden
United Porphyrias Association
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