United Porphyrias Association

Looking to connect with others who truly understand? 💜 Our April ConnectUp meetings are here, a space to share, learn, and support one another. Discover and register here: porphyria.org/events #porphyria #patientsupport #raredisease #chronicillness

March is #NutritionMonth 🍎 Join our Q&A with nutritionist and AIP patient Isabel Palazón to talk about nutrition and porphyria. 🗓 March 21 ⏰ 1 PM ET 📍 Zoom Ask your questions and join the conversation. 🔗 porphyria.org/events/nutriti… #porphyria #raredisease #nutrition

Sometimes the most powerful #support comes from someone who truly understands 💜 Through UPA 1:1 Peer Support, you can connect with trained ambassadors living with #porphyria. You don’t have to go through this alone. Request a call today: porphyria.org/upa1-1

Porphy is wearing his stripes, are you? On #RareDiseaseDay, let’s raise our voices for the millions living with rare conditions like #porphyria. 🦓 Share this. 🦓 Show your stripes. 🦓 Make rare visible. Take action here 👉 porphyria.org/advocacy-initi…

EPP vs XLP: what’s the difference?👀 Both cause protoporphyrin buildup, but for different reasons. 🚗 XLP: too much “traffic” moving forward. 🚧 EPP: the final step is slowed down. 💬 What other porphyria questions should we cover? Ask #ProfessorPorphy!

UPA’s President’s Council is expanding! 🙌 We’re inviting people living with #porphyria, caregivers, and advocates to help shape UPA’s programs, education, and #advocacy efforts through lived experience. 👉 Apply here: porphyria.org/volunteer-oppo… Your voice matters! 💜

Join us for a live Q&A with Dr. Mohamed Kazamel, #neurologist & #porphyria expert from Mayo Clinic, answering your questions on managing #chronicsymptoms of acute porphyrias. 👉Register: porphyria.org/events/ahpnerv… Have a question? This one’s for you.

From 13 surgeries and broken bones to #liverfailure and a #transplant that changed everything. Kasey’s journey with Congenital Erythropoietic #Porphyria is one of strength, science, and hope. 🔗 Read her full story here: porphyria.org/stories/kaseyc…

4 YEARS! Happy Birthday to our incredible #porphyria community 💜 So proud of what we’ve built together, and we’re just getting started. With gratitude, Your UPA Team 🎂✨ #advocacy #raredisease

After decades of misdiagnoses and dismissal, Ginger finally found answers and treatment for her AIP. Her journey is one of resilience, hope, and advocacy 💜 👉Read her full story: porphyria.org/stories/ginger… #porphyria #acuteporphyria #raredisease #misdiagnosed

Columnist Kalyn Shelton fights hard every day to maintain her purpose in life as porphyria makes nearly everything painful and difficult. buff.ly/rw1z3do

Meet #ProfessorPorphy 📚💜 Our new learning buddy is here to help explain #porphyria in a simple, friendly, and approachable way. More lessons coming soon! #raredisease #rarediseaseawareness

Feel more confident making medication decisions with AHP (AIP, HCP & VP)! Join porphyria expert Dr. Bruce Wang and patient advocate Nicolas Frias on Jan 24 for a practical webinar on using the porphyria drug safety database . Learn more and register: porphyria.org/events/ahpdrug…

Behind everything we do is a team with big hearts💜 Some of us live with porphyria, others are caregivers or believers in this mission. Together, we make it matter. #unitedporphyrias #porphyria #raredisease #chronicillness #porphyriacommunity

Dr. Rebecca Karp Leaf explains: avoiding hormonal #contraception is ideal when possible. A copper IUD may be a good option, while low-dose #progesterone IUDs can work for some patients with close monitoring 💜 read more here: porphyria.org/features/wud25… #porphyria #chronicillness

Dr. Rebecca Karp Leaf has dedicated her career to improving #porphyria care, research, and women’s health. We’re honored to spotlight her work today. 👉Learn more here: porphyria.org/features/profi… #unitedporphyrias #raredisease #research

Living with acute hepatic #porphyria can mean daily pain, weakness, and fatigue. Join our webinar on Dec 10, 1–2 PM ET with Dr. Kazamel to learn why symptoms happen and how to manage them. 👉Register here: porphyria.org/events/ahpnerv… #pain #chronicpain #neurology

Help us bring hope to #porphyria patients and families. Your #GivingTuesday donation makes a real impact. 👉 Donate here: porphyria.org/donate

What would you do if your body was failing you, but every test came back "normal"? Read Michelle's inspiring story with AIP here: porphyria.org/stories/michel… #porphyria #chronicillness

We're collaborating with @DiscMedicine on a short EPP/XLP survey and want to hear for you! The goal? Share accurate, up-to-date medical information with healthcare providers. Please respond, your participation will help improve care for our Porphamily: ow.ly/Pnhs50XuglL