December UPDATE

Dear Friend,

As 2025 comes to a close, we’re holding a lot of gratitude - and a lot of momentum! This year, the porphyria community showed what’s possible when patients, families, clinicians, and advocates move together, united. Together, we’ve pushed research forward, strengthened support for patients and families, and raised awareness in places where porphyria has long been overlooked.

Thank you for standing with us. Your advocacy and engagement help make progress possible and keep patients and families at the center of everything we do.

Read on for:

• 2025 in review: What we're most excited about
• Upcoming webinars, and recordings: Learn more about your porphyria
• Porphyria Voices: Remembering loved ones
• Our porphyria stories: Meet Michelle and Craig
• UPA in the community: Raising porphyria awareness
• Meet the UPA team: Introducing Nate
• Community updates: APEX and Shadow Jumpers

December 2025 memories

Wishing you a holiday season filled with hope, connection and good cheer 💜

Warmly,

The UPA Team

UPA was founded with a clear vision: a world free from the pain and challenges of porphyria. Guided by leading researchers and clinicians, and grounded in what matters most—patients and families, the true everyday experts in living with porphyria—we remain committed to turning that vision into reality.

In 2025, we set bold goals, and together we surpassed them. The momentum we’ve built is already carrying us into an exciting 2026. Here are just a few highlights:

• Accelerating research, with major progress in EPP and XLP studies and key regulatory milestones, including a pending FDA review.
• Bringing CEP into focus, through an FDA-attended patient meeting and meaningful steps toward the first-ever clinical trial for CEP.
• Expanding education for clinicians and the community alike, with conferences and webinars addressing the realities of daily life with porphyria.
• Providing support where it was needed most, as our team responded to a steady stream of calls and questions—helping families find answers, next steps, and care. ConnectUP meetings, UPA 1:1 Peer Support, and the Patient Navigator program were especially critical during AHP flares and attacks.
• Strengthening advocacy and global impact, supported by the Chan Zuckerberg Initiative Rare As One Network grant and continued growth through UPA Latin America.
• Coming together as a Porphamily at IPS 2025 and the Porphyria Palooza Reunion, and every day in smaller ways💜

Thank you for being part of this. 

2026, here we come!

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
• Plenty of time for a Q&A: bring your questions and real-life scenarios!

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

SAVE THE DATE: Living In The Light: Understanding, Managing, and Thriving with EPP and XLP

UPA is partnering with NORD (the National Organization for Rare Disorders) and MedliveCME to bring new EPP/XLP-related education opportunities for patients and health care providers

The patient education component will kick off on Thursday, January 29, 2026 at 11:00 am ET.

Join a dermatologist, EPP patient and advocate for an informative session where we'll cover:

• EPP/XLP 201: What you might not know about your condition
• Understanding you treatment options today
• Talking to your doctor about treatment

Save the date for this session. Registration information and more details to come in the new year!

Mind, Body & Nerves: Managing Daily Life with Acute Hepatic Porphyria

UPA recently hosted neurologist and porphyria expert Dr. Mohamed Kazamel (Mayo Clinic) for an informative webinar exploring:

• What causes porphyria pain
• Current treatments that may help manage chronic and acute pain
• Strategies to cope day-to-day

In her most recent column for Porphyria News, UPA President Kristen Wheeden reflects on the impact of the actions and care that shape our community.

My father’s legacy is the embodiment of hope in action

I find myself telling him these stories, holding both the ache of missing him and the comfort of recognizing his same quiet kindness all over this community.

One of my greatest heroes and mentors has always been my dad. Sadly, we are coming up on the first anniversary of his death, and I keep catching myself talking to him in my head.

He was amazing, not in a loud way, but in a beautiful, quiet way. I truly believe he prepared me for the world I now live in — running a nonprofit, while also embodying the giving, kindness, and connection he modeled throughout his life.

Meet Michelle, AIP Warrior

“I have people who check in. I have hope. AIP hasn’t broken me. It’s reshaped me.”

Hey, I’m Michelle, and I was diagnosed with acute intermittent porphyria 3 months ago. I’m still learning what that means for my life, but I wanted to share the story of my diagnosis journey—for anyone who feels lost, scared, confused, hopeless, or invisible, like I did.

Most people compare their health journey to a roller coaster. Mine? More similar to a Tilt-a-Whirl, individual cars spinning unpredictably on an uneven turn table, which is also spinning. You’re here, then you’re there, round & round, and just when you think things stabilize, your car goes spinning around again, flung sideways back into the chaos - sometimes less violently, sometimes more.

I am 23, but since the time I was a young teenager, I have struggled with various health problems that have been diagnosed as several different things, each one adding on to the others. I collect diseases and conditions the way others collect coffee mugs or keychains.

Meet Craig, Shadow Jumpers Founder

"It didn’t matter if we had to cover ourselves from head to toe; not participating just because the sun was out was never an option.”

Craig at Sun Escape Weekend 2025

My name is Craig Leppert. I was born in Hawaii, raised mostly on the Jersey Shore, and currently live in Los Angeles. Given my experience living with Erythropoietic Protoporphyria (EPP), I certainly haven’t made the smartest choice in where I call home.  

Shortly after my birth, we moved to Maryland, where I first exhibited symptoms of EPP. However, it would be four more years before we heard that term from a doctor, (and another thirty before I could pronounce it correctly). While my parents were away, my grandparents set up a kiddie pool for me outside our apartment. Almost immediately, I began screaming and scratching at my face and hands. My grandma later remarked that I sounded like I was on fire. 

Your Story is Important to Us!

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

Porphyria education and awareness at the American Society of Hematology

Porphyria experts Drs. Brendan McGuire, Rebecca Karp Leaf and Akshata Moghe, and Porphy at ASH

United Porphyrias Association attended the American Society of Hematology Annual Meeting in Orlando, FL in December where we exhibited alongside our porphyria experts from the American Porphyrias Expert Collaborative (APEX).

Dr Brendan McGuire (UAB), Rebecca Karp Leaf (MGH) and Akshata Moghe (UTHealth) presented Acute Hepatic Porphyria: Bridging Gaps for Better Diagnosis and Management.

These meetings are an important opportunity to raise awareness of porphyrias, share accurate information on diagnosis and treatment among healthcare providers and build connections with the broader medical community!

UPA is pleased to introduce the newest member of our growing team!

My name is Nate Milam II (he/him), and I am excited to join the United Porphyrias Association as the Patient Advocacy Operations Coordinator. I am a survivor of a rare disease called Hemophagocytic Lymphohistiocytosis (HLH) and received a life-saving bone marrow transplant after 12 years of misdiagnosis. That experience fuels my commitment to improving quality of life, expanding equitable access to care, and strengthening patient-centered advocacy in rare disease.

At UPA I support advocacy operations, patient engagement, communications, and community programming to advance awareness, research, and access to therapies across porphyria subtypes.

I am the founder and CEO of Stripes of Solidarity (SOS), serve as Ambassador and Co-Chair of the Patient Advisory Board for the Histiocytosis Association and the North American Consortium for Histiocytosis (NACHO), participate in EveryLife’s Young Adult Rare Representatives (YARR) program, and represent the Rare Disease Diversity Coalition, working across stakeholders to advance equity in research, care, and policy.

I am excited to bring lived experience, collaborative leadership, and an equity-focused lens to building spaces where patients feel seen, supported, and empowered.

American Porphyrias Expert Collaborative (APEX) announces up to five $100,000 grants for porphyria-related research

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.

Shadow Jumpers Gears Up for 6th Annual Spin Away the Sun

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.

Shadow Jumpers is a volunteer-led organization that offers community, resources, and sun-safe opportunities for people living with photosensitive conditions.

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.

Holiday Giving

Your donation brings us closer to a world free from the pain and challenges of porphyria. With your support, we're advancing quicker diagnoses, enhanced management, and greater access to treatments.