Porphyria Patient & Family Weekend
Join us in Chicago, IL on September 13-15, 2024 for a weekend of connection, celebration and learning!
Porphyria is hard enough…let’s get through this together
Join United Porphyrias Association for PorphyriaPalooza 2024, a weekend dedicated to the Porphyria community - organized by the UPA President’s Council of patients and caregivers, for patients and caregivers! Set against the backdrop of the beautiful Hilton Chicago, this event is designed to bring together the Porphyria community for a weekend of connection, learning, and enjoyment in a supportive, porphyria-safe environment.
Program Highlights
Porphyria-Safe Amenities
Thoughtfully selected to ensure a comfortable experience for everyone.
Educational Workshops
Gain insights on managing daily life, nutrition, mental health, and advocacy from experts and community members.
Porphyria-Specific Sessions
Participate in discussions specific to your type of porphyria, offering targeted support and information.
Interactive Sessions
Explore self-care options for stress management and emotional health through expressive art and somatic breathing, along with other wellness activities.
PorphyriaPalooza: The Main Stage
Enjoy an evening of music, dancing, games, and a photo booth, celebrating our shared journey and community spirit.
Porphyria Patient Concierge
On-hand support aiming to enhance your experience at every turn.
24/7 Porphyria Hub
A dedicated space available all hours for relaxation and conversation.
Registration
Registration includes all sessions, the PorphyriaPalooza mainstage event, and all meals from Friday evening to Sunday lunch!
PorphyriaPalooza registration is totally free, however a deposit is required to reserve your place. This deposit will be fully refunded to everyone who attends. The refundable deposit is $50 for the first guest and $25 for additional guests. No deposit is required for children and teens (18 and under) but registration is required.
Register by September 1, 2024 to reserve your place!
Venue & Accommodations: Chicago Hilton
PorphyriaPalooza will be held at:
Hilton Chicago
720 S. Michigan Avenue
Chicago, IL 60605
There are a number of great hotel options in the area. A limited number of rooms are available for Friday, September 13 and Saturday, September 14 at the Chicago Hilton at a special rate of $209 per night. For special rate book by August 23, 2024.
FAQs
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PorphyriaPalooza is free to attend, however we do require a deposit to reserve your place.
The deposit is fully refundable for everyone who attends the event.
$50 for the first registrant
$25 for additional guests, ages 19 and up
No deposit required for additional guests ages 18 and under, but please register
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Registration includes all sessions, the PorphyriaPalooza mainstage event, and all meals from Friday evening to Sunday lunch!
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United Porphyrias Association is pleased to offer grants of up to $500 to support an individual or a family to attend PorphyriaPalooza.
More details and the application are available here.
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Absolutely! This is a family-friendly event.
The daytime sessions will be most suitable to adults and teens, but additional activities and/or childcare will be arranged based on the number and ages of children and youth registered.
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This is event is entirely in-person.
The United Porphyrias Association offers virtual education and connection opportunities throughout the year, including Q&A’s with porphyria experts and small group meet-ups.
Learn more about these and other opportunities by signing up at porphyria.org.
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PorphyriaPalooza is being organized by porphyria patients and families, for porphyria patients and families.
The organizers are all members of the UPA President’s Council, whose role is to ensure that the experiences and needs of patients’ and their families are at the center of all of UPA’s work. The Council is made up of patients, caregivers and advocates with a connection to porphyria.
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Absolutely! We will have sessions for:
Acute porphyrias including Acute Intermittent Porphyria (AIP), Variegate Porphyria (VP) and Hereditary Coproporphyria (HCP)
Cutaneous porphyrias including Congenital Erythropoietic Porphyria (CEP), Erythropoietic Protoporphyria (EPP) and X-linked Protoporphyria (XLP), and Porphyria Cutanea Tarda (PCT)
