OCTOBER UPDATE

Dear Friend,

Happy Halloween from the United Porphyrias Association! Wishing you a day filled with sweet treats, whether it’s the comfort of rescue snacks or the joy of a creative costume. Here’s to a safe, fun, and festive celebration for all!

-The UPA Team

Porphyria Expert Dr. Bruce Wang will be taking your porphyria questions live!

Join us on the Porphyria Together Facebook Group for a Q&A on Saturday, November 2nd at noon ET.

You can check out past What's UP Doc? Live Recordings in the featured section of Porphyria Together.

UPA invites you to share your porphyria story.

Your story has the power to:

• Create a sense of belonging and mutual support within the porphyria community
• Raise awareness and understanding of porphyria among healthcare providers and the public
• Reduce feelings of isolation and challenge the stigma often associated with a porphyria diagnosis
• Offer hope, guidance and inspiration who may be facing similar challenges

We’re here to support you in telling your story, in your own voice. Stories will be featured on UPA’s social media channels, website, and in our newsletter.

Interested in sharing? Please fill out this form, and our Community Engagement Team will connect with you.

Erin Janiak, RN

UPA's Patient Navigator

Discover the support available to you through UPA's Patient Navigator:

• Connect with a porphyria specialist
• Access testing and treatments
• Get answers to your porphyria questions

Meet Erin Janiak, UPA’s Patient Navigator. As both an RN and a fellow porphyria patient, Erin is here to help you navigate the complexities of diagnosis, management, and treatment for porphyria.

For assistance and support, contact Erin at erin@porphyria.org or call 1-800-868-1292.

Applications open! Limited slots remaining for campers and volunteers

Join us for SUN ESCAPE WEEKEND 2025, a one-of-a-kind event dedicated to celebrating all things Fun and all things No Sun! We’re seeking 32 families with kids aged 6-17 affected by photosensitivity from across North America and 40 incredible volunteers to be part of this unforgettable experience at Victory Junction, North Carolina, May 1-4, 2025.

For Families: SUN ESCAPE is a free weekend adventure for children with photosensitive conditions and their families. From travel to activities, everything is covered – just bring your smiles and get ready for a fun-filled, sun-safe weekend!

Ready to Apply?



Head to www.sunescape.org to secure your spot. Application deadline is December 1, 2024.

Become a Sun Escape Volunteer!

Want to give back and help create a safe, magical experience? We need enthusiastic volunteers who will bring sunshine to this unique, no-sun event. As a volunteer, you’ll have the chance to truly connect with these amazing kids, help with the challenges they face, and celebrate their strength. Travel stipends are available for volunteers.

Be a part of something extraordinary! Learn more and apply today to join us at SUN ESCAPE 2025!

"Mental Health in the Porphyrias"

Presented at the International Congress on Porphryins and Porphyrias, Pamplona, Spain

September 2024

While the impacts of porphyria on patients' mental health are acknowledged, they remain under-researched.

This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.

Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts.

Visit our Features page for more Summing UP.

UPA's Kristen Wheeden at the NORD Breakthrough Summit

Porphyria Perspective at NORD Rare Disease Breakthrough Summit

At the NORD Rare Disease Breakthrough Summit from October 20-22, UPA attended and had the honor of sharing a powerful porphyria perspective. UPA's own Mayra Martinez was scheduled to speak about her journey with Acute Intermittent Porphyria (AIP) and her path to healing after complete paralysis. However, due to an acute AIP attack, Mayra was unable to attend in person. Instead, Kristen presented Mayra's story, allowing several hundred attendees to glimpse the challenges and triumphs of navigating life with this rare disease.

The summit brought together a dedicated community to explore themes of access, advocacy, and the advancement of innovation across rare diseases. It was inspiring to see porphyria represented on such a meaningful stage, and we are grateful for Mayra’s voice and the invaluable platform that NORD provided to share the urgent needs and experiences of those affected by rare diseases like AIP.

Kristen wrote about the experiences in her Hope in Action column:

"Mayra’s absence was a stark reminder of the unpredictability and severity of AIP, but her presence was felt in every word I spoke. She, like so many in the rare disease community, exemplifies the power of resilience and the importance of staying connected." Keep reading..

Porphyria in the news!

• The website of the Today Show recently featured Adeline's (age 7) story about coping with CEP and attending Camp Escape. Check it out!
• Suffolk County News featured Morgan's (age 14) first summer in the sun thanks to her participation in a clinical trial for her EPP. Read the article.

Tell us about your advocacy and awareness efforts!

We love to hear about your advocacy and awareness efforts too! Please send them our way at info@porphyria.org.

Every two years the International Porphyrias Symposium brings together US and international porphyria experts to explore the latest advances in porphyria research

Join us October 9-12, 2025 in Washington, DC for the International Porphyrias Symposium.

The program will feature US and international experts and will explore the clinical manifestations of each porphyria, and the latest advances in their diagnosis, management and treatment, including newly approved and emerging therapies.

Stay tuned for details!

Connect UPs are small, virtual meetings hosted by somebody who knows what you're going through. Sign up to be connected with a group of your peers!

Groups are available for all types of porphyria and for caregivers. New groups will be formed based on interest.

New Connect UP LGBTQIA+ Group

If you’re part of the LGBTQIA+ community and living with porphyria, we invite you to join our our newest Connect UP group.

Let’s come together, share our experiences, and lift each other up.

¡ConnectUP ahora en español!

¿Sabías que ahora tienes la opción de unirte a uno de nuestros grupos de ConnectUP en español? Comparte con otros tu historia y experiencia ahora en tu idioma. Regístrate aquí.

You are not alone

Sometimes you need to talk to someone who understands.

That's why we are thrilled to announce UPA 1:1, where 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.

Want to help others on their porphyria journey?

We are inviting patients and caregivers to become volunteer UPA ambassadors.

Help fellow porphyria patients and caregivers navigate their diagnosis and adjust to the realities of living with porphyria.

Comprehensive training will be provided.

 Add United Porphyrias INSTA, FACEBOOK, TWITTER to your social media feeds.