The International Porphyrias Symposium 2023: Advancing the Science and Art

Patient Day

Patient Day is about more than porphyria.
We want to celebrate getting together as a community!

Sunday, October 29, 2023, 9:15am-3pm
Hyatt Regency Bethesda
Bethesda, MD, near Washington, DC

We plan to have some fun on Patient Day! In addition to learning from experts and connecting with fellow patients and caregivers, there are activities planned and therapy dogs visiting. Our venue will have porphyria-friendly lighting and rescue foods available!

We'd love to see you in-person in Bethesda, Maryland on October 29th. You can also join from anywhere in the world via Zoom.

Free to attend! Registration is required.

Coming in person? Hotel rooms are available at a special rate until October 5, 2023- space is limited, book now!

Following is the agenda for Patient Day:

Sunday October 29, 2023

9:15 am                  Registration & Coffee

10:00 am
Welcome & Introduction - United Porphyrias Association
10:10 am
UPA Scientific Advisory Board & The Porphyrias Consortium
10:30 am
Porphyrias 101: The Basics
  • Bringing the Heme Biosynthetic Pathway to Life
  • Porphyria Genetics
11:15 am
Present Therapeutics, Future Advances & Research: Where are we headed?
11:30 am
Patient Point-of-View: Moderated Patient Discussion
12:00 pm


1:00 pm
Important Issues in AHPs: A Discussion
1:15 pm
AHP Guidelines & Patient Resources
1:45 pm
Pain & Neurology in AHP
2:15 pm
AHP Power Study
2:30 pm
Ask the Experts: Panel Discussion
3:00 pm
Closing Remarks


1:00 pm
EPP/XLP Consensus Guidelines
1:20 pm
Photosensitivity & Light Dosimetry in Cutaneous Porphyrias
1:45 pm
Current Studies & New Treatments in the Cutaneous Porphyrias
2:15 pm
Shadow Jumpers: Sun Avoidance & Emotional Health
2:30 pm
Ask the Experts: Panel Discussion
3:00 pm
Closing Remarks