July UPDATE

Dear Friend,

With summer in full swing, we hope you're enjoying time relaxing with friends and family, and finding ways to stay cool!

We can't wait to share the new resources and opportunities we've been working on. Read on for:

• New Resources! Light filters for EPP, WhatsApp Community, AHP handout, webinar recording.
• Upcoming Events: New EPP/XLP investigational treatment study and Porphyria Palooza!
• Bitopertin Expanded Access: Sites now open!
• Porphyria Voices: Living with Chronic Illness.
• Participate in Research: Thank you to participants.
• UPA and Partner Updates: Fox 5 Interview, attending Gordon Conference, UPA Latin America.
• Connect UP with Your Community: Find the group(s) for you!
• Our Stories: Meet Molly and Gillian.

We are grateful everyday for this incredible community. We're so glad you're here💜

With gratitude,

The UPA Team

Amber 81 Film to Support Emergency Patient Needs

UPA has purchased an entire roll of Madico’s Amber 81 professional window film to ensure this important resource is available when patients with light-sensitive porphyrias face unexpected medical needs.

Films are used to cover operating room lights during surgery. Amber 81 is one of the most effective commercially available films for reducing blue-violet visible light, the type of light that causes symptoms in light-sensitive porphyrias (EPP, XLP, CEP, VP, HCP, and PCT).

Hospitals, healthcare professionals, patients, and families may contact UPA to request film for an upcoming procedure or emergency situation.

To request Amber 81 film, email info@porphyria.org or call the UPA office at 800-868-1292.

Join UPA’s New Porphyria WhatsApp Community!

We’re pleased to share a new way to connect with the porphyria community!

UPA has created a WhatsApp Community, a private messaging space that allows members to connect through a phone or computer. Community members can stay in touch, share resources, ask questions, and support one another.

The community includes separate, closed discussion groups based on porphyria type and shared experiences. This creates a safer, more focused space for people to connect with others who understand.

New Handout: Guidance for Genetic Carriers of AIP, VP or HCP

If you or a family member has been diagnosed through genetic testing with acute intermittent porphyria (AIP), variegate porphyria (VP), or hereditary coproporphyria (HCP), but do not currently have symptoms, this new handout is for you.

The handout explains important next steps, what your healthcare providers should know, and precautions that may help reduce the risk of future symptoms or an acute attack. Even without symptoms, understanding your diagnosis can help you make informed decisions about medications, medical care, and other potential triggers.

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

Porphyria experts Manisha Balwani, MD, MS of Mount Sinai and Hetanshi Naik, PhD of Stanford University reviewed the new International Porphyria Network guidelines for AIP, HCP & VP, and took your questions!

Webinar: What's New In EPP & XLP? The PATHWAY Clinical Trial for EPP & XLP

Join United Porphyrias Association and Portal Therapeutics to learn about the upcoming PATHWAY clinical trial for PORT-77, a new potential treatment for EPP & XLP. 

The webinar will explore:

• Current research in EPP and XLP
• The science behind PORT-77
• What Portal has learned from the Phase 2a GATEWAY study
• The upcoming PATHWAY clinical study.

The Details

• Date: Wednesday, August 19, 2026
• Time: 6:00–7:00 PM ET
• Location: Zoom- register for link

The presentation will be recorded and available after the webinar.

PORT-77 is an investigational agent and has not been approved by any global health authorities.

In-Person: Porphyria Palooza, October 9-11!

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.

New Program Announcements!

Porphyria Palooza is all about the joy and power of coming together. We're pleased to share some more weekend details including:

• A Friday night outing to Game Show Studio where you can be your own game show star!
• A dedicated and supervised Kid's Zone during the workshops and daytime sessions.

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.

Disc Medicine’s Expanded Access Program allows eligible people with EPP or XLP to be considered for access to bitopertin, an investigational medicine being studied for these conditions, outside of a clinical trial.

Four sites for Disc Medicine’s Expanded Access Program (EAP) for bitopertin are now open to U.S. residents aged 12 and older.

Open sites are:

• 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. United Porphyrias Association helps connect interested patients with available sites, especially when a site opens in or near their region. Patients may also be able to travel to an open EAP site.

Learn more about participation criteria and receive updates on the program here.

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.

A day in the life of a chronically ill person nobody sees

By Geoff Diehl

Waking up exhausted, not “a little tired” the kind of exhaustion that makes getting out of bed feel like the first task of the day instead of the thing that happens before your day starts.

You’re already calculating before your feet hit the floor, how bad will the pain be today? How much energy do I have? What absolutely has to get done?

Realizing you can’t do everything. Not because you’re lazy or that you didn’t try hard enough, because our bodies have limits people can’t see.

Raising Porphyria Awareness on Fox 5 DC

Kristen and Brady Wheeden on Fox 5 DC

UPA President Kristen Wheeden and her son Brady appeared on Fox 5 DC earlier this month to raise EPP and porphyria awareness. They discussed realities of living with porphyria ,and how much life has changed for Brady since starting bitopertin.

UPA and APEX Sponsor 2026 Gordon Research Conference

UPA and APEX are prouds sponsors of the 2026 Gordon Research Conference on the Chemistry and Biology of Tetrapyrroles in Newport, Rhode Island July 12-17, 2026. 

Dr. Amy Medlock (L) and Dr. Amy Yeung (R) at the Gordon Conference

The Gordon Research Conference is an internationally recognized scientific meeting that brings together leading researchers studying heme, porphyrins, and related biological pathways, and provides a forum for sharing cutting-edge, unpublished research and fostering collaborations that advance the field.  

Representing UPA and APEX, Amy (Dickey) Yeung, MD, attended the meeting and connected with researchers from around the world working across basic science, translational research, and clinical medicine. “The Gordon Research Conference provided an incredible opportunity to learn from experts across a broad range of scientific disciplines, from fundamental tetrapyrrole chemistry and biology to metabolism, signaling, drug discovery, and human disease,” said Dr. Yeung. “The conference was both inspiring and motivating, and it gave me the opportunity to discuss research ideas with scientists with whom I hope to collaborate on future porphyria projects. Bringing together researchers with diverse expertise is essential to accelerating discoveries that ultimately improve the lives of people living with porphyria.”

Supporting scientific meetings like the Gordon Research Conference is one of the many ways UPA and APEX invest in the future of porphyria research by fostering collaboration, encouraging innovation, and helping connect the brightest minds working to better understand tetrapyrrole biology and its impact on human disease.  

PSST...wondering what a tetrapyrrole is? Scroll to the bottom for an explanation from Professor Porphy!

UPA Latin America Update: New Online Groups and Instagram Milestone!

UPA LATAM Director Estephany Escarcena speaking at a recent meeting in Argentina

Over the past few months, our community has been growing in ways that make us proud!

We've started holding monthly gatherings, one for patients and one for caregivers. These meetings are now happening every month. Both are spaces to share experiences, ask questions, and remind one another that no one has to face porphyria alone.

• The patient meetings are led by UPA Advocate, Mayra Martinez, a familiar face to many in our community.
• The caregiver meetings are guided by Maria Jimenez, a Colombian mother of a patient living with Acute Intermittent Porphyria.

We're also celebrating our growing audience of 300+ followers on Instagram (@porfiriasunidas), where we share news, resources, and the dates of our upcoming meetings.

Thank you to everyone who participated in the AI Use Survey!

Thank you to everyone who responded to the AI Use survey. The survey is now closed and UPA is working with hematologist Dr. Richard L. Godby (Mayo Clinic), to analyze the responses.

Your participation will help UPA, healthcare providers and institutiions to support patients and families in using AI in safe, helpful, and meaningful ways.

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.

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

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

• Guided Meditation
• Reflection & Prayer
• Caregivers
• Pacientes de Porfiria
• Cuidadores de Personas con Porfiria
• LGBTQIA+

New Connect UP Groups

Guided Meditation

Join us for Guided Meditation, a gentle Connect Up session led by Scarlett Dias, designed to help you slow down, release tension, and reconnect with yourself. Scarlett will guide you into a calming space where your mind and body can rest, reset, and restore. 

First meeting: Thursday, July 16 at 6 PM ET

Register

Cuidadores de Personas con Porfiria

Un espacio de apoyo y conversación para cuidadores y familiares de personas con porfiria. Comparte tus experiencias, escucha a otros cuidadores y conecta con personas que entienden este camino.


Viernes, 17 de julio, 7 PM ET. Regístrate.

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.

Meet Molly, EPP Warrior

"Anything difficult that I have to deal with now won’t be nearly as hard as being undiagnosed and being told that I was wrong about the pain I was feeling."

My name is Molly Komon. I am 12 years old, and I am an Erythropoietic Protoporphyria (EPP) patient. In my free time, I bike, play tennis, and play the flute.

My symptoms first began when I was one year old. I was at the beach screaming for hours for no explainable reason. My parents and grandparents had to push me around in my stroller in the shade for me to stop crying.

The earliest reactions that I can remember were very frustrating. I kept telling all of the adults around me how much it hurt, that it felt like I was being burned alive. At the time I was around 5 or 6 years old, so no one believed me. They told me that it was all in my head and that I just needed to calm down or put on lotion because they thought it was dry skin. Once, an urgent care doctor even told me that she thought I had duck itch.

Meet Gillian, AIP Warrior

"My diagnosis, while a challenge, has been a gift of closure I didn’t know I needed."

I’m Gillian Brickey. My first name is pronounced with a soft G like giraffe, though I’m short and squat and nothing like one. My husband Justin and I have four sons and a daughter in-love.

Looking back, I can see that acute intermittent porphyria (AIP) has been part of my life for a long time, but I wasn’t diagnosed until my mid-forties when a round of COVID 19 fully unmasked its fury. Christmas of 2023, I was forty-five years old, and as my husband and sons recovered from the dreaded virus, I worsened. Pancreatitis and COVID 19 were my initial diagnoses, but it was clear something else was hanging onto me that I just couldn’t shake. Days turned into weeks, then months in bed. As I began to sort of recover in March 2024, another wave hit me in April. 

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.

Professor Porphy's Science Corner!
What's a tetrapyrrole and what does is have to do with porphyria? 

Pyrroles are a type of molecule with 4 carbons and a nitrogen in a ring.

Porphyrins and heme have 4 pyrroles in their structure, making them a type of tetra (meaning 4) pyrroles. Can you find the 4 pyrrole rings in the porphyrin molecule below? 

Have a question for Professor Porphy? Email info@porphyria.org!