The Future of Porphyria...Raising Awareness, Research and Therapies
Bethesda, MD
Joined January 2022
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- Following281
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Still not over Porphyria Palooza? Neither are we! 💜
📍 DENVER! Join our next UPA LinkUP on Nov. 6, 7–9 PM, with Dr. Bruce Wang for expert insights, Q&A, and time to connect with your Porphamily!
🔗 Register: porphyria.org/events/denver2…
#Porphyria #patientsupport #RareDisease
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United Porphyrias Association retweeted
Sometimes there's nothing to show. No rash, no blister — just pain that no one else can see. Ryan describes what living with EPP felt like as a child, long before anyone had a name for it. Watch the full series, Behind the Mystery of EPP, at youtube.com/playlist?list=PL…
PULSE is the largest porphyria study in the world, and you can now join from anywhere in the U.S. All types and ages welcome. It’s free, and there are no experimental drugs 💜
👉 Complete the interest form: porphyria.org/research-oppor…
#Porphyria #RareDisease #research
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A historic milestone for the CEP community! The first #clinicaltrial for Congenital Erythropoietic #Porphyria (CEP) is underway, with 3 patients receiving their first doses of an investigational treatment! 🔬
🔗 Read the full press release: files.constantcontact.com/3a…
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1 WEEK until #PorphyriaPalooza 2026! 🎉 Oct 9–11 in Kansas City: 1:1 expert consults, workshops, a dance party & so much more for our #Porphamily 💜
Who's coming? Reply and tell us what you're most excited for! 👇
Register: cvent.me/Ry5ZBv
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Only 15 DAYS until #PorphyriaPalooza ! 💜🎉 Are you ready?!
Discover everything we have planned for an unforgettable weekend in #KansasCity 👀👇
web.cvent.com/event/d78bc3e0…
#Porphyria
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NEW #porphyria merch! 💜 Moms, dads, little warriors, patients, accessories & more.
And this is just a peek 👀 We have 100+ pieces on our website!
🛍️ Shop the full collection: porphyria.org/merch
#PorphyriaAwareness #RareDisease #PorphyriaWarrior #PorphyriaCommunity
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🎒 Back to school with #porphyria can bring unique challenges.
UPA Junior Ambassador Molly shares how their 504 Plan helps them navigate school safely while living with porphyria 💜
🔗 Read their story: porphyria.org/features/backt…
#RareDisease #BackToSchool
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Have a #porphyria question for an expert? 👀 Registered #PorphyriaPalooza2026 attendees can request a limited, complimentary 20-minute appointment with Dr. Bruce Wang or Dr. Amy Dickey Yeung.
👉Request an appointment: jotform.com/form/26236506544…
#PatientEducation
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Living with #porphyria can take an emotional toll, too 💜 Join Julie Wells for Porphyria & Mental Health: What You Should Know and explore emotional well-being, medical trauma, uncertainty & more.
📅 Aug 31 | 7 PM ET
🔗 Register here: porphyria.org/events/mentalh…
#MentalHealth
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📩 Our August eNews is here! Catch up on the latest #porphyria news, research, treatment updates, upcoming events, new resources, patient stories & more!
👉 Read the full August eNews: porphyria.org/features/enews…
#PorphyriaAwareness #RareDisease
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🚨 Hotel discount ends Sept. 8! Coming to #PorphyriaPalooza? Register & book your hotel soon to secure the discounted group rate!
🎁 Exclusive Palooza sweatshirt
🎉 Kids Zone for kids & teens
💜 A weekend with your Porphamily
Register: porphyria.org/events/palooza…
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Liver health matters in AHP. Join porphyria expert Bruce Wang, MD to learn about liver health, cancer risk, monitoring & surveillance for AIP, HCP, VP & ADP.
📅 Aug. 22 | 12 PM ET
💻 Zoom
🔗 Register here: porphyria.org/events/ahp-liv…
#Porphyria #livercancer #LiverHealth
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🔔 Webinar Reminder! Join UPA & GondolaBio to learn about the upcoming PATHWAY #clinicaltrial for PORT-77, a potential new treatment for EPP & XLP 💜
Learn about the science, current #research & what’s ahead.
Register here 👉 porphyria.org/events/portal
#Porphyria #raredisease
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Calling all future #porphyria advocates!🚨 If you're 12–17 and connected to porphyria, apply to become a UPA Junior Ambassador! Build #leadership skills, earn #volunteer hours, and make a difference.
🗓️ Apply by Aug. 11:
porphyria.org/volunteer-oppo…
#RareDisease #PatientAdvocacy
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📄 New resource! Genetic carrier of AIP, VP, or HCP but not experiencing symptoms? Our new handout explains what you need to know, important precautions, and how to help reduce the risk of future acute attacks.
👉 Download it here: porphyria.org/features/ahpge…
#porphyria
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Join us for a special webinar on the upcoming PATHWAY clinical trial for PORT-77, a potential investigational treatment for EPP & XLP.
📅 Aug. 19, 2026
🕕 6 PM ET
💻 Register here: porphyria.org/events/portal
#Porphyria #chronicillness #RareDisease #clinicalresearch
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📬 Our July eNews is here! Catch up on the latest #porphyria news, new resources, upcoming events, and updates on the #Bitopertin Expanded Access Program.
👉 Read it here: myemail.constantcontact.com/…
💜 Subscribe so you never miss an update!
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In a new Porphyria Voices article, AIP patient Geoff Diehl shares an honest reflection on the invisible challenges of living with #porphyria.
💜 Read the full story: porphyria.org/features/adayi…
#ChronicIllness #RareDisease #InvisibleIllness #PorphyriaCommunity
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Join us in Dallas for the UT Southwestern Porphyria Education Forum! Learn from #porphyria experts about causes, triggers, skin symptoms, acute attacks, liver health, patient stories, and more.
🗓 June 27, 2026
⏰ 10 AM–2 PM
📍 Dallas, TX
Register here: porphyria.org/events/dallas
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