March UPDATE

Dear Friend,

As the days grow longer and the sun shines brighter, we know this season can bring added challenges for many in our porphyria community. At the same time, UPA continues to support individuals and families across all of the porphyrias, including helping people with acute porphyria navigate hospital stays, access treatment, and manage the many uncertainties that can come with care.

It is a busy and meaningful season at UPA. This month, we are sharing advocacy opportunities, educational resources, upcoming events, and stories from across the community as we continue working toward a world with greater understanding, better care, and more hope for everyone affected by porphyria.

• Join the Cause: Patients for Bitopertin
• Nutrition Resources: UPA guide and recordings
• Sneak Peek: Upcoming events
• New video highlights EPP: Watch Candace's story
• Porphyria Voices: The choices we make
• Porphy Everywhere: Porphy now shipping internationally!
• Meet Carina: UPA hosts Genetic Counseling student
• New Education Resource: On-demand course for EPP patients and caregivers
• Our Stories: Meet Daniel and Kay
• Partner Updates: APEX holds research summit
• Connect UP with your community: Upcoming meeting schedule

We are here to support you, and we hope this month’s updates help you feel informed, connected, and never alone. 💜

With gratitude,

The UPA Team

Patients for Bitopertin is a patient-driven advocacy effort focused on one urgent goal: helping move forward access to bitopertin for people living with EPP and XLP.

Created in response to the FDA’s February 13, 2026 Complete Response Letter, this effort was launched because we believe the decision does not reflect the lived experience of people with EPP and XLP. For patients and families, this delay means more pain, more missed moments, and more time waiting for a treatment that could make a meaningful difference. We will raise our voice in the same way for any treatment with meaningful potential for our community.

Visit the Patients for Bitopertin Action Center

1. Stand with the porphyria community: sign your name
Sign and invite your friends, family and colleagues to add their name in support of people living with EPP & XLP and the effort to move bitopertin forward. 

2. Share your story

Personal stories help others understand the real impact of EPP & XLP. Share your story to be featured on Patients for Bitopertin website and social media and Post to your social media to spread the word.

3. Contact your legislators and the FDA

Our leaders need to understand the impact of this decision on real life. Messages help them understand the lived experience behind the data and the real-world impact of delay, and raise awareness and urgency. Sample messages and additional resources available to contact your legislators and send a message to the FDA.

4. Join the Facebook Group and follow us on social media

Show decision makers we have an active community that cares about this issue. Join the Patients for Bitopertin Facebook Group to connect with others in the community and follow us on Instagram and LinkedIn.

By patients for patients!

Patients for Bitopertin Leadership Team

Candace Colbert, EPP

Amy Dickey, EPP

Monica Fleegel, EPP

Ginger Gonsalves, EPP

Rebecca Kelliher, EPP

Craig Leppert, EPP

Victor Meijias, EPP

Erin Strunk, EPP mom

Cortney Tabakelis, EPP

Shawn Willis, EPP

Are you participating in the Phase 3 APOLLO trial?

Thank you! Your data strengthens the case for FDA approval. Remember to complete all study tasks promptly, respond to study coordinators and encourage others to stay active!

What we eat is foundational to our health, but the advice around nutrition and porphyria is often confusing and contradictory. To help cut through the noise, here are some UPA resources to help you navigate nutrition decisions when you have porphyria.

NEW RECORDING! Nutrition & Acute Porphyrias Q&A

Thank you to nutritionist and fellow AIP patient Isabel Palazon for taking our questions on March 21!

Check out the recording for responses to questions like:

• Should you avoid a high protein diet if you have AIP?
• Is it safe to eat onions, garlic and tomatoes?
• Why do I get shaky a few hours after eating?

Other Porphyria Nutrition Resources

Recording: Lifestyle and Nutrition in Porphyria Webinar

Explore the science behind porphyria and nutrition, and gain helpful tips and strategies to manage your porphyria. Originally recorded in 2024, this webinar covers nutrition information for all types of porphyria and is also available in Spanish.

UPA Dietary Guide and Sample Meal Plan

This resources covers all types of porphyria and focuses on specific dietary and nutrition recommendations for porphyria. It also includes a sample meal plan.

Here are some of the exciting initiatives UPA will be bringing to you in the coming months!

May 18 is Global Porphyria Day!

On May 18 we'll be joining our porphyria friends from around the world to raise awareness of porphyria. Look for many ways, large and small that you can get involved, including:

• Special Live Q&A with a Porphyria Expert
• Information and stories that you can share with your networks
• Resources to create your own posts

... and more!

Look for a special email with all the details in April!

International Porphyria Art Challenge- Launching Soon!

Help promote understanding and raise awareness of the realities of porphyria!

Porphyria patients, caregivers and advocates from around the world are invited to create and submit an art piece in their preferred medium (visual art, video, music, writing, etc) based on their experiences with porphyria.

Winners will be selected by public vote and everyone is encouraged to view, vote and share pieces that resonate with you! Challenge details coming soon!

Sun Escape Weekend: April 30- May 4

The countdown is on for Sun Escape Camp 2026! Together with Shadow Jumpers, we are preparing for an unforgettable camp experience at the end of April.

We are excited to welcome 32 photosensitive campers and their families and 45 amazing volunteers who are either living with EPP or support someone who is. We are busy planning activities and creating a safe, joyful space where kids and families can feel understood, supported, and free to simply be themselves. 

This year’s Sun Escape Weekend theme, LEVEL UP, celebrates the games, imagination, and creativity that fill our campers’ summer afternoons while the sun is out. From video games and board games to puzzles and toys, the theme turns playtime into power and reminds us that every obstacle can become a new level to conquer. Check out last year's theme Be Heroic where each camper was given their own superhero persona!

We cannot wait to welcome everyone back for another incredible Sun Escape Weekend!

“I am looking at the safest path to get from point A to point B by going quickly to the shadow of a building or a tree, and then running fast to get to the next shadow.”

GondolaBio recently shared a beautiful video featuring Candace's EPP story.

In her own words, Candace reflects on the relief of finally receiving a diagnosis, what it means to navigate life with EPP, and how she's now using her voice to raise awareness and educate others about the condition.

Porphyria Voices is a UPA blog where we share experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family.

I Would Choose Him, Everytime

"Going into our marriage, I knew there would be struggles. Not just the typical marriage struggles, but the kind where I would stand by his side through every surgery, every pain, every blister, every sore.”

By Holly Hamilton

As I sit here with him and look down at my wedding ring, I have flashbacks to the day we got married. Besides having our children, it was one of the best days of my life.

Going into our marriage, I knew there would be struggles. Not just the typical marriage struggles, but the kind where I would stand by his side through every surgery, every pain, every blister, every sore. I knew there would be days where I’d help button his pants, put on his shoes and socks, cut up his food, open things for him, and so much more. I went into this marriage knowing I wasn’t just becoming his wife — I was also becoming a caretaker...

UPA was fortunate to host Carina Leveroni, a Master’s student in Human Genetics and Genetic Counseling at Stanford University for an advocacy rotation this past semester. 

Genetic counselors help individuals and families understand inherited conditions, genetic testing, and what results may mean for their health and medical decisions. With her passion for science, education, and helping people better understand complex medical conditions, Carina was a natural fit for UPA and especially for our work in Congenital Erythropoietic Porphyria (CEP).

During her rotation, she developed resources to support patients and families affected by CEP. Her work included:

• Reviewing CEP research and identifying key takeaways
• Creating a clear “Summing Up”, patient friendly versions, of the literature
• Gathering financial resources for patients and families
• Building a variant database and visual tools related to enzyme activity
• Helping create a CEP video with porphyria expert Dr. Angelika Erwin
• Preparing for the CEP Weekend in February 2026

Carina’s time with UPA sparked an even deeper interest in this work. Next, she will be completing her master’s thesis alongside UPA!

Opportunities like this matter to educate future leaders in rare disease. Thank you, Carina, for the energy, thoughtfulness, and care you brought to UPA and to the CEP community!

International shipping is now set up for the UPA's Store.

Bring home your very own Porphy or other porphyria-related merch!

Check out this 30-minute on-demand online session produced in partnership with NORD and Medlive. designed for people living with EPP or XLP and their caretakers!

The panel features Dr. Raegan Hunt, EPP Patient Andrew Turell and UPA President Kristen Wheeden and will help you learn more about your EPP/XLP, share tips on how to stay safe while living as normally as possible and navigating school, work, and social situations.

The program is made up of 3 short chapters:

• What You Might Not Know About EPP/XLP: impacts like fatigue, anxiety, and relationship challenges
• What are Your Treatment Options Today: how new therapies may help both EPP and XLP
• How to Talk to Your Doctor About Treatment: tips for sharing your symptoms in a way that helps guide treatment

Meet Daniel, CEP Warrior

"Our family quickly became familiar with what felt like a second home. We spent most days in appointments at UCSF Children’s Hospital, meeting with doctors, nurses, and specialists who would help care for him throughout his journey."

Daniel was born with Congenital Erythropoietic Porphyria (CEP) and was diagnosed when he was only a couple of days old. His journey began almost immediately after birth and he spent his first months of life in the NICU. After those long early days in the hospital, he finally came home for the first time at two and a half months old.

From that moment on, the hospital remained a big part of Daniel’s life. Our family quickly became familiar with what felt like a second home. We spent most days in appointments at UCSF Children’s Hospital, meeting with doctors, nurses, and specialists who would help care for him throughout his journey.

In spite of everything he had to face from such a young age, Daniel developed his own unique way of embracing those experiences. He became well known at the hospital for his love of getting his vitals taken and playing with the machines. In fact, he became so familiar with them that he even learned how to take his own vitals.

Meet Kay, AIP Warrior

"Porphyria doesn’t have to define you. If you let it, you’ll stay trapped in that dark, sick place you’ve built around yourself."

In 2019, we tragically lost our son, and at the same time, I entered menopause. I believe the overwhelming grief combined with those hormonal changes triggered a severe porphyria attack. At the time, we dismissed it as just the flu—and I thought I was being overly dramatic.

In 2021, we moved back to our hometown, but my symptoms only worsened. Thankfully, I found an exceptional doctor who never once doubted me or assumed I was faking it. He ran every test imaginable, yet nothing definitive showed up.

Fast forward to 2022: I had lost 90 pounds and felt constantly ill. We ordered more blood work and another urinalysis. When I arrived at the doctor’s office, my urine was strikingly red. I remember thinking, “What in the world?” The moment he saw it, he suspected exactly what was happening, but he sent the sample for confirmation anyway.

Sure enough, the next week he called with the diagnosis: Acute Intermittent Porphyria (AIP). Soon after, he arranged for hemin treatment, and I began infusions.

We want to help you share your story

We're here to help! Fill out an interest form or reach out to our Community Engagement Team at info@porphyria.org.

APEX Convenes International Basic Research Summit to Advance Porphyria Science

With support from the United Porphyrias Association, the American Porphyrias Expert Collaborative (APEX) convened the International Human Heme Biosynthesis and the Porphyrias Basic Research Summit 2026 from March 13 to 15 in Bethesda, Maryland.

The Summit brought together leading investigators from the United States and Europe to identify the most important gaps in knowledge related to human heme biosynthesis and degradation and to explore research strategies to address them.

The goal of the meeting was both ambitious and practical: to develop a prioritized list of unsolved scientific questions with the greatest potential to improve diagnosis, treatment, and prevention across the porphyrias. By focusing on areas with strong translational promise, the Summit helped lay the groundwork for the next generation of porphyria research.

The meeting was co-chaired by Harry Dailey, PhD, of the University of Georgia, Athens, and Eliane Sardh, MD, PhD, of Karolinska Institutet, Stockholm.

Next, APEX will build on the momentum of this meeting with a Clinical Summit, expanding the conversation to clinical priorities and translational opportunities across the porphyrias.

Connect UPs are safe, friendly online meet ups where you can connect with others who understand what you're going through.

Upcoming Connect UP Meetings

Acute Porphyrias (AIP, HCP, VP & ADP)

Weekly on Wednesdays

Hosted by Mayra and Ginger

Next meeting: Wednesday, April 1 at 1:30 PM ET

Location: Zoom- register for the link

Paralysis & Acute Porphyrias (AIP, HCP, VP & ADP)

Hosted by Geri and Michelle

Next meeting: Wednesday, April 1 at 1:30 PM ET

Location: Zoom- register for the link

Porphyria Caregivers Connect UP

Monthly on the 3rd Saturday of the month

Hosted by Wilson and Charles

Date: Saturday, April 18 at 12 PM ET

Location: Zoom- register for the link

AHP Men (AIP, HCP & VP) Connect UP

Monthly on the 3rd Sunday of the month

Hosted by Geoff

Date: Sunday, April 19 at 6 PM ET

Location: Zoom- register for the link

Reflection & Prayer Connect UP

Monthly on the 3rd Tuesday of the month

Hosted by Sean

Date: Tuesday, April 21 at 7 PM ET

Location: Zoom- register for the link

Cutaneous Porphyrias Connections- This Sunday!

Monthly on the 4th Sunday of the month
Hosted by Candace

Next meeting: Sunday, April 26 at 3 PM ET

Location: Zoom- register for the link

CEP & HEP Connections

Monthly on the 1st Saturday of the month

Hosted by Justin

Next Date: Saturday, May 2 at 6 PM ET

Location: Zoom- register for the link

Connect Online Anytime: Porphyria Together Facebook Group

Share your successes and struggles on our private Facebook community: Porphyria Together.

This group is a great place to connect with others, gain tips and insights on managing your porphyria, and access exclusive livestreams where porphyria experts take your questions.