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Events

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

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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.