United Porphyrias Association

08/27/2026

⏰ Only 4 DAYS LEFT to enter our Porphyria Palooza Giveaway!

Don’t miss your chance to be one of 2 winners receiving travel support to join us at Porphyria Palooza 2026 in Kansas City! 💜

And remember: the more eligible entries you make, the more chances you have to win! 👀

🏆 Winners will be announced Monday, August 31!

Good luck, Porphamily! Kansas City might be calling your name! ✈️

🎉 WE’RE SENDING TWO PEOPLE TO PORPHYRIA PALOOZA! 💜

Dreaming of joining us in Kansas City this October? Now’s your chance!

We’re giving away TWO travel packages to help make your trip to Porphyria Palooza 2026 possible.

Each winner will receive:
✈️ Up to $500 in travel assistance
🏨 Hotel accommodations during the event (2 nights)
Porphyria Palooza is a weekend filled with connection, education, unforgettable activities, and a community that truly understands what living with porphyria is like.

Here’s how to enter:
💜 Follow United Porphyrias Association
👥 Tag 2 porphyria friends in the comments
🌟 Bonus entry: Share this post to your Instagram Stories and tag United Porphyrias Association

Want more chances to win? Tag additional porphyria friends in separate comments, the more you participate, the more chances you have to win!

📍 Kansas City, MO
📅 October 9–11, 2026
Open to U.S. residents only.

Winners will be announced at the end of August.

Good luck, we can’t wait to see you at Porphyria Palooza! 🤩

08/26/2026

Don’t just take our word for it, hear it from the people who’ve experienced Porphyria Palooza!

Now, come experience it for yourself! 🎉 Don’t wait to book your stay! Our discounted hotel rate is only available through September 8. After that, availability may be limited and rates may increase.

📍 Kansas City, MO
📅 October 9–11, 2026

✈️ Travel stipends of up to $500 are available to help with travel expenses.

Ready to make your own Palooza memories? 💜 Register today here: https://www.porphyria.org/events/palooza26

08/25/2026

Living with porphyria can affect so much more than your physical health 💜 The uncertainty, constant self-advocacy, and challenges of navigating a rare disease can take an emotional toll, too.

Join trauma-informed trainer and facilitator Julie Wells for Porphyria & Mental Health: What You Should Know, a special conversation about emotional well-being, coping with uncertainty, medical trauma, and recognizing your own emotional needs.

📅 Monday, August 31
⏰ 7 PM ET
💻 Zoom, register here: https://www.porphyria.org/events/mentalhealth

08/24/2026

For most of her life, Lexi has had to choose between protecting herself from the sun and being part of the moments happening in it ❤️‍🩹

She was diagnosed with Erythropoietic Protoporphyria (EPP) as a baby. EPP is a rare type of porphyria that causes severe, often invisible pain after exposure to sunlight. For Lexi, that meant missing summer camps, pool parties, recess, beach days, and many of the experiences other children took for granted.

Then she became a mom.

Suddenly, avoiding the sun was no longer so simple. She had two energetic toddlers who wanted to play outside, go to the pool, take walks, and make memories in the sunshine. Lexi wanted to be the mom swimming beside them, not the mom watching from the shade.

Through Disc Medicine’s Expanded Access Program, Lexi has now started treatment.

And just one week in, she says the sun already feels drastically different ☀️

She has taken her children to the pool without her sun-protective gear. She has gone on walks with them without pain. After a lifetime of planning around the sun, she’s finally getting to experience moments she once thought might never be possible.

“I have already spent my entire childhood in constant EPP pain. I don’t want to spend another minute of my motherhood in it too.”

💜 Lexi’s story is also a reminder of why access to treatment matters so deeply to patients and families living with EPP/XLP

👉Read her full story through the link in our bio.

08/21/2026

Is there anything Porphy CAN’T do??? 😂 Apparently not 🤭 Porphy has been BUSY! Enjoy this photos of Porphy living his best (and very busy) life!

Have a funny or unexpected Porphy photo of your own? Drop it in the comments, we may need a Part 2! 👀💜

08/21/2026

Our August eNews is here! 💌 Don’t miss everything that’s been happening in the porphyria community! This month’s edition is packed with the latest news, research, resources, treatment updates, upcoming events, and community stories.

Inside: Porphyria Palooza, upcoming AHP webinars, new resources, EPP & XLP treatment updates, research opportunities, UPA news, ConnectUPs, powerful patient stories, and much more! 🤩

👉 Read the August eNews and stay up to date with everything happening at UPA: https://www.porphyria.org/features/enews26-08

Your August porphyria UPdates are here! Featuring new webinars, research opportunities and patients stories!

08/20/2026

Important update for the EPP & XLP community! ☀️

Four sites for Disc Medicine’s Expanded Access Program (EAP) for bitopertin are now open to U.S. residents ages 12 and older. The program allows eligible people living with EPP or XLP to be considered for access to bitopertin, an investigational medicine, outside of a clinical trial.

📍 Currently open sites:
Boston, MA — Mark Amster, MD
New York, NY — Manisha Balwani, MD
Miami, FL — Cynthia Levy, MD
Winston-Salem, NC — Sean Rudnick, MD

More sites are expected to open in the coming months, and patients may also be able to travel to one of the currently open locations.

Visit https://www.porphyria.org/features/bitopertineap to learn more about participation criteria and receive updates as new sites become available 💜

An Expanded Access Program, or EAP, for bitopertin is now available in the United States for people with EPP or XLP ages 12 and older. Complete an interest form to learn more.

08/20/2026

Important update for the EPP & XLP community! ☀️

Five sites for Disc Medicine’s Expanded Access Program (EAP) for bitopertin are now open to U.S. residents ages 12 and older. The program allows eligible people living with EPP or XLP to be considered for access to bitopertin, an investigational medicine, outside of a clinical trial.

📍 Currently open sites:
Boston, MA — Amy Yeung
Boston, MA — Mark Amster, MD
New York, NY — Manisha Balwani, MD
Miami, FL — Cynthia Levy, MD
Winston-Salem, NC — Sean Rudnick, MD

More sites are expected to open in the coming months, and patients may also be able to travel to one of the currently open locations.

Visit the link in bio to learn more about participation criteria and receive updates as new sites become available 💜

08/20/2026

Hotel Discount Ends September 8!🚨
Planning to attend Porphyria Palooza?🎉 Be sure to register and book your hotel room soon. Our discounted group hotel rate is only available through September 8, after which availability may be limited and rates may increase.

Plus, every registered attendee will receive an exclusive Porphyria Palooza sweatshirt! 🤩
And for families, our Kids Zone offers a fun-filled, camp-style experience designed just for kids/teens.

👉Register today to secure your spot, your sweatshirt, and an incredible weekend with the porphyria community: https://www.porphyria.org/events/palooza26

08/19/2026

If only it were that easy… 😂💜

Stress can affect how we feel and may even be a trigger for some people with porphyria, but porphyria is not “just stress.” It’s a group of rare disorders related to the body’s heme-making process, and the symptoms are very real, even when others can’t see them.

💜 Tag your porphyria or chronic illness friend who will relate to this!