🧬 EPP & XLP are rare—but missing the diagnosis can be life-threatening. Medlive + NORD’s latest program helps clinicians recognize & understand these underdiagnosed conditions. 🎓 Learn from a doctor who treats and lives with EPP. 🔗 bit.ly/3FukZc5 #Porphyria

We're bringing back the magic of Porphyria Palooza! 🎉 Join us for the REUNION — Aug 16, 3PM ET 🙌 Games, laughs & porphamily vibes! 👉 Register: porphyria.org/events/reunion… #UnitedPorphyrias #Porphyria #community

Even if you carry the AHP gene and feel fine, your body might not be. A new study shows many gene carriers have high ALA & PBG — even without symptoms. 🔎 Learn why testing matters in our latest SummingUp: porphyria.org/features/sumup… #UnitedPorphyrias #porphyria #research

Cortney grew up hiding from the sun due to EPP. After joining a clinical trial, her life changed—she now enjoys sunny days pain-free 💜 Read her story → porphyria.org/stories/cortne… #UnitedPorphyrias #porphyria #skincondition #raredisease

HCPs: Every acute hepatic #porphyria (AHP) attack matters. Your patient’s next attack could have life-changing consequences, like irreversible neurologic damage. Learn how timely diagnosis and management can help avoid potentially devastating outcomes.

Attention #EPP & XLP friends! Two new sites in the US are now enrolling patients for APOLLO, a Phase 3 clinical trial to determine if bitopertin reduces PPIX levels and eases sun exposure symptoms in people with EPP & XLP #porphyria. Learn more porphyria.org/research-oppor…

Check you inbox for the latest porphyria events, news and resources! Not on the mailing list? Check out the latest eNews and subscribe at: porphyria.org/sign-up

Join Ironman athlete and AIP patient Lauren Thompson for a discussion on staying active when you have porphyria. We'll be sharing strategies on nutrition, listening to your body and more. Thursday, August 28 at 7 PM ET! Sign up: porphyria.org/events/connect…

HCPs: The burden of living with acute hepatic #porphyria (AHP) can greatly impact your patients’ quality of life. People living with AHP may have higher risk of long-term complications that have an immense emotional toll including depression and anxiety.

“A #porphyria flare changed everything… but not our weekend.” 💜 UPA Ambassador Sean Albright shares how he turned an unexpected challenge at #UniversalStudios into a story of resilience and joy. 🔗 Read more: porphyria.org/features/seanu… #UnitedPorphyrias #porphyriawarrior

Rare #EPP case: symptoms began in the liver, not the skin 😳 Early #diagnosis is key to prevent life-threatening damage. 📖 Read more here: bit.ly/4mAns51 #liver #health #liverfailure #porphyria #raredisease

How does #sunlight impact people with #EPP and XLP? 🌞 Our latest SummingUP breaks down the LIGHT Study, which puts real numbers behind daily struggles— #pain , isolation, and healthcare barriers. 📖 Read the summary: porphyria.org/features/sumup…

📣 Just 22 days until the Patient & Family Conference at #IPS2025! Get ready for expert-led workshops on daily life, nutrition, mental health & advocacy. ✨ And that’s just one part — we’ve got more surprises coming. Stay tuned! 💜 Discover more: web.cvent.com/event/05b94f27…

Are you a #porphyria patient who creates #art ?🎨 Join Unseen Warriors by UPA for the NIH “Rare Diseases Are Not Rare!” Challenge! 💜 ps: there's a $5,000 prize! 👀 📩 Email [email protected] to be part of our team. #UnitedPorphyrias #raredisease #chronicillness

This is a significant milestone for our #porphyria community! The FDA submission represents progress toward more treatment options for EPP & XLP- options that could change what everyday life looks like for patients and families who live with this rare disease💜

Something purple… something soft… something filled with love 💜 Can you guess what’s coming? 👀

We are looking forward to welcoming #porphyria patients, doctors, researchers and stakeholders tomorrow for the start of IPS 2025! Registered? Check your inbox for a link to the event app!

Fantastic news for our community! For families who plan life around light, every month matters. The FDA’s National Priority Voucher recognizes the urgency faced by people living with EPP and moves this review onto a faster track- offering faster clarity and certainty!

Join us for our next webinar: Mind, Body and Nerves: Daily Life with Acute #Porphyria with Dr. Mohamed Kazamel! 👉 Register here: porphyria.org/events/ahpnerv… #neurology #neurologist #nervoussystem

🧛‍♂️ Tired of the “vampire disease” myth? Dive into the real story behind #Porphyria — how it’s misdiagnosed, misunderstood, and finally getting the spotlight it deserves. ➡️ Read article here: physiciansweekly.com/post/qa-unders… HAPPY HALLOWEEN 🎃 #vampire #vampiremyth