January UPDATE

Dear Friend,

On January 26, UPA celebrates its 4th birthday! Reflecting on the past four years we are so proud of what we've achieved and profoundly grateful to each of you. Your support and involvement inspire us everyday, and we're excited to continue working with and for you!

Looking forward, our plans for the upcoming year are ambitious as we work towards our vision of a world free from the pain and challenges of porphyria. Read on to learn more about what's coming up:

• Join the President's Council: Help shape UPA's work and priorities
• Learn and Connect: Webinars, Q&A and ConnectUP meetings
• Get ready for Rare Disease Week: Learn more and advocate
• Read the latest EPP/XLP treatment update: Tanabe Pharma shares positive results from INSPIRE Study
• Meet Justin and Ginger: Two new Porphyria stories
• Say Hello to Professor Porphy: A new learning buddy for our community
• Preview 2026 Gatherings: Opportunities to connect in person
• Check out partner updates: Spin Away the Sun and APEX grants

With gratitude,

The UPA Team

Help strengthen patient support, improve educational resources, inform awareness and advocacy efforts, and elevate the needs that matter most right now.

The United Porphyrias Association (UPA) President’s Council is our advisory group that helps ensure UPA’s programs and priorities reflect real lived experience across the porphyrias.

Who should apply:

• People living with any type of porphyria, caregivers and family members and advocates committed to respectful, inclusive community building

What participation looks like:

• Monthly virtual meetings, evening in Eastern Time Zone
• Input on UPA initiatives and community needs
• A shared commitment to confidentiality and trust

If you are interested, please complete a short interest form.

Applications close: February 15, 2026

I’m Lina Rebeiz, and I live with acute intermittent porphyria (AIP). I’m honored to serve as Chair of UPA’s President’s Council, and I’d love to invite you to consider joining us.

We meet monthly to share insights and help strengthen support and resources for the porphyria community. Being on the Council reminds me that our lived experiences have power, and when we bring them together, we help UPA meet people where they are.

Thank you for being part of this community. I hope you’ll consider adding your voice!

With gratitude,

Lina

This Weekend!
Let's Talk About Drug Safety & Acute Hepatic Porphyrias

People with Acute Hepatic Porphyrias (AIP, HCP, VP, ADP) are advised to check a “safe drug list,” but it isn't always clear how the lists are developed, how to find medications or what to do if a medication isn't listed.

Join porphyria expert Dr. Bruce Wang (UCSF) and patient advocate Nicolas Frias for an informational webinar on using the porphyria Drug Safety database. This session will walk through the basics in plain language and leave you feeling more prepared and confident when navigating medication decisions with AHP.

We will cover:

• Why certain medications can trigger AHP attacks and why drug safety guidance matters
• The history of drug safety recommendations and why the NAPOS list is recommended
• How experts decide what is considered safe, unsafe, use with caution, or unknown
• How to use the database in daily life (including brand vs generic names and combination medicines)
• What to do if a drug is not listed, including working with your pharmacist and care team

Educational session only. Always confirm medication decisions with your healthcare team.

• Date: Saturday, January 24, 2026
• Time: Noon-1:00PM ET (find your local time here)
• Location: Zoom- register for link

Back by Popular Demand! 
Acute Hepatic Porphyrias Neuropathy & Pain

Dr. Mohamed Kazamel (Mayo Clinic), neurologist and porphyria expert will be taking your questions on managing the chronic symptoms of acute porphyria (AIP, HCP, VP & ADP).

Gain practical insights into symptom management, neurological complications, and emerging care approaches, and connect with others who understand what you’re going through.

• Date: Saturday, February 7, 2026
• Time: 5:00 PM ET (find your local time)
• Location: Zoom- register for link

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

Cutaneous Porphyrias Connections- This Sunday!

Hosted by Candace

Date: Sunday, January 25 at 3 PM ET

Location: Zoom- register for the link

Earlier this month we also hosted an amazing Connect UP for Acute Porphyrias that focused on breathwork and another for CEP & HEP.

Join the Connect UP mailing list for the next discussion topics and dates!

UPA 1:1 Porphyria Peer Support

Sometimes you need to talk to someone who understands.

With UPA 1:1, we connect you with a UPA Ambassador who understands what you're going through, because they've been there too.

Connect by phone or video call to receive support, guidance and build meaningful connections with a fellow porphyria patient or caregiver. Available in English and Spanish.

At the end of February, rare disease advocates from across the US and around the world work together to shine a light on the realities and needs of individuals living with a rare disease.

Here are some of the ways you can participate and bring a porphyria perspective to rare disease advocacy!

Attend Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill will be held in Washington, D.C. from February 24-26, 2026.

We encourage all porphyria advocates to attend this event to share their stories with legislators and connect with other members of the rare disease community. Registration is open now and will close on February 6.

Rare Disease Week 2026 will feature:

• Day 1: Share your Story- Learn how to effectively share your experiences with your Senators and Representatives.
• Day 2: Legislative Conference- Learn about legislation that impacts the rare disease community and how you can advocate.
• Day 3: Hill Meetings & Caucus Briefing- Join with other advocates from your state to advocate for important policy changes, and hear from members of the rare disease community and policy experts about rare disease developments on Capitol Hill.

Find the full agenda and learn more here.

Plan to attend? Let us know so that we may share materials and opportunities to connect with others from the porphyria community. Email UPA Legislative Advocacy Manager, Keili McEwen at keili@porphyria.org.

More Rare Disease Day events and opportunities

Find an event in your area.

The National Organization for Rare Disorders has a listing of Rare Disease Days events across the US.

Tanabe Pharma Releases Positive Results from Phase 3 Clinical Trial

Tanabe Pharma (formerly Mitsubishi Tanabe Pharma) has announced positive results from the INSPIRE Phase 3 Clinical trial for EPP & XLP!

Thank you to everyone who participated in this and earlier trials! Participation in research advances our understanding of porphyria and our entire community can benefit from treatment options.

Read the press release and stay tuned for updates!

Meet Justin, a CEP Warrior whose story has gone viral

Posted in January 2026, Justin's story currently has more than 1.7 million views on Instagram and thousands of likes and comments.

I was born and raised on a small family farm in southwest Nebraska, where I developed a deep passion for raising crops and animals, as well as for the great outdoors- hunting, fishing, and sports- in spite of the challenges posed by my rare disease. 

My journey with Congenital Erythropoietic Porphyria (CEP) began in infancy. At just two months old, I started showing signs of skin blistering. By six months, my diagnosis was confirmed after my parents noticed my teeth coming in dark grey and my urine turning red. Twenty-eight years ago, doctors knew very little about CEP, leaving my family to navigate much of my care on their own. My mother did everything she could to protect me, using sunscreen, hats, gloves, and long-sleeved clothing to shield my skin from the sun. 

I've always been drawn to the world outside. I spent my youth helping on the family farm, playing high school sports like football, basketball, and track, and embracing every outdoor activity I could... keep reading and watch Justin's story.

Meet Ginger, AIP Warrior & UPA Ambassador

“I no longer see porphyria as my enemy, but as something that has built my character, strengthened my faith, and equipped me to support others in ways I once desperately needed myself.”

My porphyria journey began when I was just 13 years old. My first attack came just days after my first menstrual cycle and brought more than a month of relentless abdominal pain and nausea. Instead of answers or support, I was met with confusion, disbelief, and accusations that my symptoms were self-inflicted. Those early years set the tone for the two decades that followed, countless attacks, frequent emergency room visits, and medical teams who dismissed my symptoms as imaginary, emotional, or drug-seeking behavior.

Throughout my teenage years, early adulthood, and pregnancies, I pushed through debilitating pain while raising a family and trying to live a normal life. During four pregnancies, some marked by premature delivery, hospitalization, and neurological complications, I continued to be misdiagnosed and misunderstood. When I experienced hallucinations, seizures, insomnia, and excruciating abdominal and nerve pain, I was still told I was “fine,” that I was exaggerating, or that I was simply looking for medication. Despite the chaos and fear, I kept fighting for answers.

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.

Meet Professor Porphy! Our new learning buddy is here to help explain porphyria in a simple, friendly, and approachable way.

This idea was inspired by a very special young artist, Evelyn, the daughter of a porphyria patient, whose beautiful drawing helped bring Professor Porphy to life. Thank you, Evelyn, for reminding us that awareness can start with imagination and heart 💜

Follow Professor Porphy's lessons and request topics on UPA's Instagram and Facebook accounts!

Something magical happens when our community gathers in person, and we're looking forward to bring you more of these life-changing opportunities to connect in 2026. Here's a sneak peek:

CEP: Living Stronger Together Weekend

This February in Cleveland, OH, UPA is hosting a weekend dedicated to our CEP community. Building on the momentum of the meaningful patient connections made at the FDA CEP Patient Meeting in Bethesda, MD this past fall, this special event brings together CEP patients, caregivers, and families to connect, share experiences, learn, and find support.

We are thrilled to have Megan and Kristina from the United Porphyrias Association President’s Council helping to plan this meaningful gathering.

Contact us directly at info@porphyria.org to learn more!

Porphyria Patient & Family Forum in Dallas, TX

UPA is working closely with our newest Scientific Advisory member, Dr. Taha Bat at UT Southwestern Medical Center for a special one-day education event for porphyria patients and caregivers. Speakers will include porphyria expert Dr. Karl Anderson, and specialists in emergency medicine, dermatology and hematology.

Connect with others in your region and hear from

• Date: Saturday, April 25, 2026
• Time: 10 am to 2 pm
• Location: UT Southwestern Medical Center in Dallas, TX

Details and registration coming soon!

Sun Escape 2026

From Thursday April 30th to Sunday May 3rd we're teaming up with Shadow Jumpers for the third year o our epic sun safe camp experience at Victory Junction in North Carolina!

Every activity is planned with sun safety in mind. Families can look forward to archery, horseback riding, ziplining, fishing, a petting zoo, swimming in the outdoor pool, and plenty of time to laugh, share, and bond with others in the community.

Sun Escape 2026 is fully enrolled with families and volunteers- can't wait to see you there!

Global Porphyria Day: May 18, 2026

We're looking forward to raising porphyria awareness and celebrating our shared and diverse experiences with our porphyria friends from around the world!

Look for opportunities big and small to participate in Global Porphyria Day in the coming months!

Connect with Your Porphyria Family: Porphyria Palooza 2026!

Join us in Fall 2026 for our second Porphyria Palooza!

This weekend will be a Porphamily (porphyria family) Reunion where we come together as a community to share our stories, celebrate our strengths and have fun.

Stay tuned for details!

We look forward to a productive year supporting the porphyria patient community – our “Porphamily”!!

Spin Away The Sun is Next Week!

Our friends at Shadow Jumpers are gearing up for their annual Spin Away the Sun event the weekend of January 30, 2026, with gatherings in New Jersey, Boston, and Los Angeles.

UPA is proud to support their work and often connects patients and families with Shadow Jumpers for added support, connection, and practical ideas for everyday life.

APEX Applications Due February 1, 2026

APEX recently announced up to five $100,000 grants to support mentored post-doctoral research focused on basic or translational research in heme biosynthesis and relevant research into the pathogenesis or treatment of the porphyrias. 

This grant supports research that advances the development of new treatments and improves our understanding and care for porphyrias. Learn more.