November UPDATE

Dear Friend,

We’re grateful every day for you, the incredible members of our porphyria family, who we affectionately call our porphamily 💜 Your support, generosity, and the way you show up for each other inspires us constantly. Together, we’re making a real difference for everyone living with porphyria.

We can't wait to share the updates in this month's eNews, including:

• Help advocate for better care and treatments: Opportunities for EPP, XLP and CEP
• What's UP Doc? Birth control safety and acute hepatic porphyrias
• Webinars, upcoming and recordings: Learn more about your porphyria
• Sun Escape 2026: Applications open until December 6!
• Meet your porphyria experts: Dr. Rebecca Karp Leaf
• Our porphyria stories: Meet Ashley and Sarah
• Porphy is here! Check out the porphyria store
• UPA in the community: Raising porphyria awareness in the community
• Community updates: Shadow Jumpers and UPA Latin America

November 2025 memories

We hope your Thanksgiving is filled with warmth, good food, and moments of joy. We're here for you.

Warmly,

The UPA Team

PS. Keep count of the number of the number of Porphyria Experts you spot in photos or thumbnails in this eNews and read to the end for this month's challenge 👀!

Have EPP or XLP and live in the US? Help us identify local health care providers.

You are invited to take part in the Community Care Survey for Patients with EPP & XLP.

This brief survey will help identify where people living with erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) receive care in their local communities. The information collected will be used by Disc Medicine to provide accurate, up-to-date medical and scientific information to local healthcare providers who treat EPP and XLP patients.

The survey takes only a few minutes to complete and your participation is voluntary, confidential, and incredibly valuable. The information gathered will be shared only in aggregate — no identifying details will be reported.

Do you have a connection to Congenital Erythropoietic Porphyria (CEP)? We want to hear your voice!

The United Porphyrias Association is preparing a Voice of the Patient Report summarizing the issues and needs of CEP patients and families at the meeting. This report will be shared with the FDA and be publicly available.

If you or a loved one is impacted by CEP, anywhere in the world, we want to include your voice in this report. You can provide your thoughts here.

Contraception Recommendations for Acute Hepatic Porphyrias

Each month we have a member of UPA's Scientific Advisory Board answer a question submitted by you- the members of our porphyria community.

Today’s answer comes from Dr. Rebecca Karp Leaf of the Massachusetts General Hospital in Boston, MA

After I was diagnosed with AIP, we had our children tested for porphyria and found out our 17-year-old daughter has the gene for AIP. Should she avoid hormonal birth control? Are there safe options for her?

That's a great question. The answer is that it really depends on what she's on birth control for. Would she be taking birth control for heavy periods, for contraception or for both reasons? 

Avoiding hormonal contraception would be ideal, if possible. The copper IUD (copper T or ParaGard) has no hormones however it can increase bleeding. There are also low-dose progesterone-only IUDs, Which are well tolerated by some but not all patients...keep reading.

Thank you to Dr. Karp Leaf for this What's UP Doc? answer! Do you have a question for a porphyria expert? Send it to info@porphyria.org.

Mind, Body & Nerves: Managing Daily Life

with Acute Hepatic Porphyria

Chronic symptoms such as pain, weakness, numbness, insomnia, and fatigue can take a significant toll on daily life for those living with acute hepatic porphyria (AIP, HCP, VP, ADP).

Join neurologist and porphyria expert Dr. Mohamed Kazamel (Mayo Clinic) for an informative webinar that will explore: 

• Why chronic porphyria symptoms occur
• Current treatments that may help manage these symptoms
• Practical strategies to cope day-to-day

Following Dr. Kazamel’s presentation and Q&A, you’ll have the opportunity to share your own experiences, tips, and strategies and to help highlight the areas where more research and resources are urgently needed. 

• Date: Wednesday, December 10, 2025
• Time: 1:00-2:00PM ET (find your local time here)
• Location: Zoom- register for link

Webinar: Liver Transplants & Porphyria with Dr. Amy Dickey Yeung

Discover the sometimes critical role liver transplantation can play in porphyria care in this informative session , including:

• The science behind porphyria—what’s happening in the body
• When and why liver transplants may be considered
• The different types of liver transplants, benefits, and risks

You’ll also hear three remarkable porphyria patients, each living with AIP, CEP or EPP, share their personal transplant journeys.

Facebook Live Q&A with Dr. Bruce Wang

Thank you to all the livestream participants and to Dr. Wang for joining us on November 15 in the Porphyria Together Facebook Group! We covered some important topics, including:

• Triggers and managing risks with acute hepatic porphyrias (AIP, HCP, VP)
• Treating porphyria blisters (PCT, CEP, VP, HCP, HEP)
• Genetic factors in EPP/XLP
• Drug safety in acute porphyrias

...and much more! Check out the time stamps in the video description to find questions of interest to you!

Have a question? You don't need to wait until the next livestream! Email it to info@porphyria.org and we'll arrange for a UPA Scientific Advisory Board member to respond!

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

Cutaneous Porphyrias Connections

Hosted by Candace

Topic: Thanksgiving catch up & tips for managing symptoms

Date: Sunday, November 30 at 3:00 PM ET

Location: Zoom- register for the link

Parents of Photosensitive Kids

Hosted by Marianna and Megan

Topic: Navigating the holidays & light sensitivity

Date: Saturday, December 6 at 6 PM ET

Location: Zoom- register for the link

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

Join us Thursday April 30th to Sunday May 3rd for our epic sun safe camp experience at Victory Junction in North Carolina!

We’re so happy to be back for the third year of one of our favorite weekends - a time to connect, relax, and make memories together. 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.

Shadow Jumpers and the United Porphyrias Association are accepting applications to fill our 32 family slots and 40+ volunteer positions. Deadline to apply is December 6, 2025.

Families must have a photosensitive child between the ages of 6-16. Volunteers must have a photosensitive condition themselves or be personally connected to one. Space is limited, not all families and volunteers will be accepted.

Accommodations, meals and all activities are at no cost to families and volunteers! Camp families qualify for 100% reimbursement of their travel expenses to and from camp while our volunteers can receive up $500-$600 in travel stipends.

The porphyria community is so fortunate to have passionate researchers, physicians and advocates who work alongside us to make a better future for porphyria!

In this feature, we’ll dive into conversations with porphyria experts and advocates to explore their work, groundbreaking research, emerging treatments, and more!

Meet Dr. Rebecca Karp Leaf, Porphyria Expert

Patients help us do better research—you ask the questions that we need to answer! 

Please introduce yourself and tell us a bit about your connection to porphyria.

My name is Rebecca Karp Leaf and I am a classical hematologist- a blood doctor. I see patients with a variety of blood disorders and as hematologists we often are called to see patients with porphyria.  

In 2019, Dr. Amy Dickey Yeung and I started the Porphyrias Center at Massachusetts General Hospital in Boston, where we now follow over 150 patients with a diagnosis of porphyria ranging from the acute hepatic porphyrias to the cutaneous porphyrias. Our center is also very involved in clinical and translational research. We have multiple clinical studies up and running and are very excited about new medications that have come into the clinic. 

I also have a particular interest in reproductive health and women's health, and research the interaction between women's health and the porphyrias. 

Meet Ashley, EPP Warrior

"I share my story to spread awareness for porphyria, to help others find answers sooner, and to remind anyone fighting their own unseen battle that they’re not alone."

For years, I lived in pain I couldn’t explain. The sun was something most people see as warmth and light, for me, it felt like my enemy. I spent so much of my life hiding from it, not knowing why. Simple things like walking through a parking lot in summer was excruciatingly painful. The burning was intense and often lasted for days. 

It wasn’t until January 2024 that I finally got the answer: Erythropoietic Protoporphyria (EPP), a rare genetic condition that causes severe reactions to sunlight. By the time I was diagnosed, I was in liver failure, spending 64 days in the hospital. Just a few months later, in June 2024, I underwent a life-saving liver transplant, a moment that changed my entire world.

Meet Sarah, AIP Warrior

"I want to share my experiences because I know that I’m not alone. I hope that by telling the truth about what porphyria is really like, it helps others feel less alone."

It started in 2013, when I started to get severely ill and was hospitalized monthly for weeks at a time. I would experience extreme abdominal pain, violent vomiting, neuropathy throughout my limbs, all mixed with mental confusion.

I found myself questioning the very basics of life. With stressors from all angles, my purpose was lost beyond the mundanity of work life. I felt weighed down by responsibilities and even more so by my health. Through the cracks of that chaos, something inside began to shift. 

Not all at once, but like a door I didn’t know even existed, my mind slowly crept open. I started to question everything, not with despair, but with curiosity. My thoughts began to stretch and reframe my pain as a teacher, my confusion as motivation.

I have found meditation, tai chi, qigong, and other forms of energy work that help me manage my daily symptoms and be ready for each day with a fresh mindset and resilience. 

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.

UPA Raises Awareness at The Liver Meeting in Washington, DC

Kristen Wheeden with porphyria expert Dr. Brendan McGuire (UAB)

United Porphyrias Association attended the American Association for the Study of Liver Diseases' Liver Meeting in November where we exhibited alongside our porphyria experts from the American Porphyrias Expert Collaborative (APEX).

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!

Learn more about APEX.

Get your porphyria merch and support UPA!

Porphy is there when other's can't be. To listen when words are hard, to comfort when courage runs low, and to remind you always: You are not alone

Our snuggly new friend made his debut at the Patient & Family Conference in October and now you can have a Porphy of your very own!

Full-size and keychain Porphy stuffies are now available in the UPA store! Check off your holiday checklist and give back to the porphyria community with every purchase.

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

UPA's sister organization Shadow Jumpers is seeking fundraising riders to help raise funds while also breaking a sweat during their 6th annual Spin Away the Sun fundraiser on the weekend of January 30, 2026 in New Jersey, Boston and LA!

Shadow Jumpers is entirely volunteer-run, with the majority of their funding coming from the generosity of donors and community. Thanks to Spin Away the Sun, Shadow Jumpers provides sun-safe family vacations, home renovations, a UV clothing drive, our annual camp, and much more.

United Porphyrias of Latin America

We’re so proud to see the progress of our new affiliate, UPA Latam, as they add their voice to the wonderful work of other porphyria organizations across the region! Here are some of the highlights from November:

• UPA Latam hosted it's first What's UP Doc? Live meeting on November 21. Dr. Julián Ramírez Cheyne answered questions on acute intermittent porphyria from patients across Latin America!
• UPA Latam Director, Estephany Escarcena, was honored to speak at the 3rd National Meeting of Porphyria Patients in Colombia, and connect with some of the other patients and advocates working in Colombia and Latin America!

Be the first to know about upcoming UPA Latam events and initiatives! Sign up for their mailing list.

How many Porphyria Experts did you spot in this eNews?



Respond to this email with your answer- the first right answer will receive a Porphy keychain!

Imagine how many patients they collectively serve and support.

We'd truly blessed and so thankful for all the doctors and researchers who work with our community 💜