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.
Following is the agenda for Patient Day:
Sunday October 29, 2023
8:00 am Peaceful Porphyria Morning
A serene morning meditation for friends
interested in starting early!
9:00 am Coffee, Conversation & Registration
Interactive Stations – In-Person & Live Stream
- What’s Up, Doc? LIVE! – coffee chat with porphyria docs
- Nutrition Table: Resources and Guidance for AHPers
- Journaling: Journey with notebooks, purple pens and writing prompts
- Shadow Jumpers – They remove the sun so you can focus on family!
- Connect UP – learn about facilitated networking sessions
- Tell Your Story! Spotlight Stories will record short videos of your powerful stories
- Notes of Hope: Notes for the Newly Diagnosed
10:00 am
Rays of Hope: Kicking Off Our Day Together!
10:10 am UPA Scientific Advisory Board & The Porphyrias Consortium
10:20 am In the Spotlight: Triumph Over Porphyria
Featuring “LifeLivedFearless” Blogger, Cortney Johnson (EPP) &
Clinical Research Coordinator, Lina Rebeiz (AIP)
10:30 am
Decoding Porphyria: A Guide to Your Disease
- Bringing the Heme Biosynthetic Pathway to Life
- Unraveling the Helix: Decoding the Genetics of Porphyria
11:15 am
Present Therapeutics, Future Advances & Research: Where are we headed?
11:45 am
Paws for Comfort: A Healing Pet Therapy Meet & Greet
12:00 pm
Nourish & Network: Porphyria Patient Day Lunch
TRACK 1: ACUTE HEPATIC PORPHYRIA
1:00 pm
Expert Ears: Navigating Life with AH
1:15 pm
AHP Guidelines & Patient Resources
1:45 pm
Pain & Neurology in AHP: Understanding Pain Management
2:15 pm
AHP Power Study: Validating Patient Quality of Life
2:30 pm
Inquiring Minds! An Expert Panel Q&A
3:00 pm
Reflecting & Looking Forward: A Closing Conversation
3:15 pm Closing the day, Until Next Time...
TRACK 2: CUTANEOUS PORPHYRIAS
1:00 pm
EPP/XLP Consensus Guidelines
1:30 pm
Current Studies & New Treatments in the Cutaneous Porphyrias
1:45 pm
Shadow Jumping & Emotional Health: Navigating Wellness – Patient Panel
2:15 pm
Expert Insights: A Live Q&A
2:45 pm
Advocacy & Community Building in Cutaneous Porphyri
3:00 pm
Illuminating the Path Ahead: Closing Reflections
3:15 pm Sunset on Our Session: See you next time!
Around the Room Porphyria Warriors Wall, Porphyrin Cookies, Gloves Giveaway, Porphyria Playlist, Purple Ribbons…and more!
REGISTER FOR PATIENT DAY
