Events

Join Dr. Amy Dickey to learn more about the the analysis of phase 2 clinical trials testing the safety and effectiveness of bitopertin to treat EPP.

Date: Saturday, July 13, 2024
Time: Noon ET
Location: Zoom

REGISTER TO RECEIVE THE LINK

Nutrition and Lifestyle in Porphyria- July 20, 2024 

Join us on Saturday, July 20 to learn about lifestyle and nutrition strategies to help you manage your porphyria.

We're excited to welcome with nutritionist and AIP patient Isabel Palazon to discuss this important topic!

Date: Saturday, July 20
Session 1 (en español): Noon-1:00 PM ET
Session 2 (in English): 1:30-2:30 PM ET

REGISTER TO RECEIVE THE LINK

PorphyriaPalooza Patient and Family Weekend: September 13-15, 2024

Porphyria is hard enough… let’s get together to share stories, build community, and have fun!

Join us for PorphyriaPalooza 2024 the first ever UPA Patient and Family Weekend on September 13-15, 2024 in Chicago, IL.

This event is free (deposit required) and travel assistance is available!

Learn more and register!

SUN ESCAPE WEEKEND: May 3-5, 2024

We had a transformative weekend in May with 20 sun-sensitive kids, ages 6-16, their families and our friends at Shadow Jumpers where we celebrated all things FUN and NO SUN!

We're already thinking about next year. Be sure to sign up to get all the latest announcements!

You are not alone!

Connecting with others who understand what you're going through is a great way to build a support system and community. UPA is pleased to launch Connect Up small group meetings for patients and caregivers to connect and socialize with others in a safe and inclusive environment. Connect UP groups will be peer-led and offered regularly over Zoom. SIGN UP HERE.