MAY UPDATE

Dear Friend,

There is a lot to share this month, because this community is connecting, advocating, and showing up in powerful ways. From Global Porphyria Day to new resources, research updates, community events, and patient stories, UPA is moving forward with a clear mission: supporting patients and families while advancing awareness, research, and care across all porphyrias.

We are especially grateful to everyone who gave in honor of Global Porphyria Day. Your donations make this work possible 💜

• New Resources for Acute Porphyrias: Treatment recommendations
  Drug safety database available in Spanish
• Voting Now Open: Vote for your favorite Art Challenge pieces by June 1.
• Porphyria Palooza Is Coming: Register for the event and apply for travel support today!
• Global Porphyria Day Highlights: Your stories, Q&A with Dr. Wang and more
• Patients for Bitopertin Update: Join our livestream on May 28
• Attention Dallas,TX: Join us for a Porphyria Patient and Family Forum on June 27
• Get Involved in Research: How do you use AI?
• In the Community: UPA at Digestive Disease Week, on Capitol Hill and more!
• Our Stories: Meet Cheyenne and Sabina
• Connect UP with Your Community: New young AHP Connect UP and monthly meeting schedule

Read on, friends. We’re glad you’re here. 💜

With gratitude,

The UPA Team

New Evidence-Based Guidelines for Acute Hepatic Porphyrias

An international panel of porphyria experts, convened by the International Porphyria Network (IPNET) and including several members of UPA's Scientific Advisory Board, have published new evidence-based guidelines for treating acute porphyrias (specifically AIP, HCP and VP).

The guidelines are intended for medical professionals and cover topics like medication, weight loss, hormonal contraception, treating attacks, managing attacks and recommendations for follow up.

Patient-friendly summary of guidelines now available!

UPA has prepared a patient-friendly summary to help patients and families better understand what the new guidelines mean.

In the latest Summing UP, we walk through the recommendations in plain language and highlight key takeaways for the patient community.

Webinar: Let's Talk About the New Acute Porphyria Guidelines

Join UPA for a conversation about the new acute porphyria guidelines and what patients and families should know.

Porphyria experts Manisha Balwani, MD, MS of Mount Sinai and Hetanshi Naik, PhD of Stanford University will join the discussion to help explain why the guidelines matter, what they include, and how they may support better care for people living with acute hepatic porphyrias.

• Date: Thursday, June 25
• Time: 6:00 pm ET
• Location: Zoom- register for link

Drug Safety Database Now Available in Spanish

This week the Global Porphyria Advocacy Coalition (GPAC) announced that the NAPOS Safe Drugs Database, the recommended porphyria drug safety database, is now available in Spanish. Read the press release.

Health professionals and patients will now be able to search for and review safety information in Spanish, reducing the barriers to care.

We are thrilled to share the creativity, honesty, and heart of the porphyria community.

This year, we received more than 30 entries from 13 countries and 15 U.S. states. The gallery includes stained glass, photography, poetry, painting, collage, drawing, mixed media, and more. Each piece offers a powerful glimpse into the lived experience of porphyria.

Voting is open now through June 1. We invite you to explore the gallery and vote for your favorite pieces.

Thank You to Our Art Challenge Sponsor!

The International Porphyria Art Challenge is made possible by the support of Recordati Rare Diseases.

Join United Porphyrias Association live on the Patients for Bitopertin Facebook Group for an update on bitopertin advocacy efforts.

Join us Thursday, May 26 from 6:00-7:00 pm ET (local time) to get the latest on:

• Feedback from the FDA
• Up-to-date information on the Expanded Access Program 
• Patients for Bitopertin efforts 
• Next steps 

Join UPA and a panel of knowledgeable health care professionals, including Scientific Advisory Board members Karl Anderson and Taha Bat, for an in-depth look at porphyria.

Presentations and panels will cover all types of porphyria and will cover porphyria causes and triggers. Managing symptoms, liver health, patient stories and resources to support you on your porphyria journey.

• Date: Saturday, June 27, 2026
• Time: 10 am to 2 pm
• Location: UT Southwestern, Dallas, TX

Lunch provided. No cost to attend, but please register in advance.

Join us for a Porphamily Reunion!

Porphyria Palooza is coming to Kansas City, MO this fall! Join us for a weekend that is all about connection, learning and fun with your porphyria family.

Porphyria Palooza highlights will include:

• Tons of opportunities to meet and connect with others who understand what you're going through
• Interactive discussions and workshops to help you manage daily life with your porphyria
• Porphyria-safe amenities and a 24/7 Porphyria Hub
• A Saturday night dance party to celebrate coming together as a community

...and so much more!

Registration is $25/person for adult and free for children and teens under 18, and includes all meals and snacks, a dance party, special outing and more!

Porphyria Palooza is an accessible, family-friendly event. Get all the details and register at porphyriapalooza.com.

Financial Support to Attend

A limited number of travel stipends of up to $500 are available to help cover travel and registration costs for patients who may otherwise be unable to attend. Each porphyria patient family is eligible for one stipend application.

On May 18, 2026 we joined our porphyria friends from around the world to raise porphyria awareness for Global Porphyria Day! Here are some of the highlights:

Turning Purple For Porphyria

UPA sent out more than 700 free porphyria awareness ribbons in the weeks leading up to Global Porphyria Day.

We loved seeing all the friends, families and supporters wearing purple, sporting their ribbons, changing profile pics and lighting up local landmarks purple!

All Your Responses to "One Thing I Wish You Understood"...

Our social media media feeds were full of things you wish others understood about porphyria. From the impacts on daily life, difficult symptoms and invisible realities your answers helped make porphyria real to others and shows that we are not alone.

Check out @unitedporphyrias on Instagram to see responses!

Getting Our Questions Answered- Recording Available!

Dr. Bruce Wang took our questions live on Facebook! Check out the recording for answers on:

• Light safety
• Attacks while on givorsiran
• The importance of establishing a PBG/ALA baseline

....and so much more!

Thank You to Our Global Porphyria Day Sponsors!

How do you use AI? UPA wants to know!

Many people use artificial intelligence (AI) to learn more about healthcare, rare diseases, and blood disorders, including the porphyrias. But we still do not know much about how people are using these tools, what questions they are asking, or what kind of help would be most useful.

Healthcare providers, institutions, and organizations want to support patients and families in using AI in safe, helpful, and meaningful ways. This short, anonymous survey will help us better understand those needs.

What we learn could help guide future education, increase awareness, and support the development of practical tools such as prompting guides, disease-specific chatbots, and other helpful resources.

Porphyria patients are the center of all porphyria research!

There are multiple studies going on right now that need your patient expertise. Check out our current opportunities and find out how you can participate here.

May has been a busy month in the porphyria world!

Along with Global Porphyria Day, here are some of the ways UPA is building community and advancing porphyria awareness and research!

UPA at Digestive Diseases Week in Chicago

UPA was proud to participate in Digestive Disease Week 2026, one of the largest gatherings of gastroenterology, hepatology, research, and clinical care professionals. UPA brought porphyria awareness directly to those who may first encounter acute hepatic porphyria symptoms with the exhibit theme “Is It Porphyria?”

Highlights included a Medscape educational experience Drs. Brendan McGuire, Bruce Wang, and patient advocate Mayra Martinez, whose words brought the disease to life. Kristen Wheeden also presented POWER Study findings on quality-of-life impact in recurrent and nonrecurrent AHP patients.

Sun Escape Weekend 2026: All Fun and No Sun for kids and families

UPA was thrilled to host Sun Escape Weekend 2026 in North Carolina, alongside our extraordinary partner, Shadow Jumpers!

This year’s LEVEL UP theme brought nearly 200 campers, families, and volunteers together for games, crafts, dancing, music, s’mores, silly challenges, late-night laughter, and sun-safe adventures designed so every camper could fully join in. A familiar chant around camp said it best: ALL FUN, NO SUN!

It was a long weekend where families felt supported, campers felt free, and joy was everywhere. We laughed, played, cheered, and celebrated in a place built for belonging. For one unforgettable weekend, Sun Escape was the best place on earth.

UPA Joins Coalition of Skin Diseases Hill Week

UPA was proud to participate in Coalition of Skin Diseases Hill Days, joining advocates from across the skin disease community to raise awareness and speak directly with lawmakers about the needs of patients and families.

These meetings were an important opportunity to share the realities of living with porphyria, especially photosensitive porphyrias, and to emphasize the need for research, access to care, treatment options, and policies that reflect real patient lives.

Together with Coalition partners, UPA helped bring patient voices to Capitol Hill, turning lived experience into advocacy, connection, and forward motion.

APEX Convenes International Clinical Research Summit

With support from UPA, APEX convened the International Human Heme Biosynthesis and the Porphyrias Clinical Research Summit 2026 from May 15 to 17 in Bethesda, MD. The Summit brought together international clinicians and researchers to advance clinical research- research has the goal of improving the diagnosis and care of patients- across the porphyrias.

At the summit, participants identified gaps in clinical knowledge and achievable research approaches to address them. The discussion was informed by patient perspectives from a UPA-hosted focus group. The priorities identified by patients and researchers overlapped strongly, reinforcing that patient questions are central to the science.

Together, these shared priorities will help guide future collaborative clinical research that reflects both scientific opportunity and patient need.

Meet Cheyenne, EPP Warrior

"As I got older I began to stop accepting my life in the shadows and went out in the sun regardless of the pain."

My name is Cheyenne, and I live with Erythropoietic Protoporphyria (EPP). For most of my life, the sun wasn’t something I could enjoy, it was something to fear. 

Before bitopertin, I could only spend 30 minutes in the sun before receiving early warning symptoms such as tingling. A reaction for me felt like burning while my skin was being pricked with thousands of tiny needles.

EPP stopped me from doing many things. It stopped me from doing sports, from going to pool parties, from simply enjoying Fourth of July cookouts and Memorial Day bonfires. 

Meet Sabina, AIP Warrior

"I hope awareness of AIP continues to grow so that people, especially women whose symptoms are often dismissed as stress or menstrual pain, can receive faster diagnoses and better care."

My symptoms began in March 2024 while I was studying abroad in Cork, Ireland during a semester exchange arranged by my university in Rome. My first attack happened toward the end of March after a night out with friends. The next morning, I started feeling extremely nauseous and experienced severe stomach pain. Since I hadn’t done anything unusual, I initially thought it was food intoxication because I had never experienced that kind of pain before.

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.

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

New Connect UP Group: Young AHP

A supportive space for people in their teens and early twenties living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP and ADP) to connect, share experiences, and build community. Moderated by Hailey Brionez, this group offers a place to feel understood and supported by others navigating similar journeys. 

First meeting: Friday, May 29 at 6 pm ET

Find the Connect UP Groups for You!

Connect UP groups are formed based on interest or shared experiences. Follow the links below or visit the Connect UP page to learn more about upcoming groups!

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

• Weekly Acute Porphyrias
• Youth
• Men
• Paralysis

For Cutaneous Porphyrias

• CEP & HEP
• All Cutaneous (EPP/XLP, PCT, CEP, VP, HCP)

For Well-Being, Not Porphyria Specific

• Caregivers
• Reflection & Prayer

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.