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Events

SUN ESCAPE WEEKEND: May 3-5, 2024

Shadow Jumpers and the United Porphyria Association are teaming up for SUN ESCAPE WEEKEND 2024 happening at Victory Junction in North Carolina from May 3-5, 2024. 

This transformative weekend will bring together 20 kids with sun-sensitive conditions, ages 6-16, and their families from around the country to celebrate all things Fun and all things No Sun in a way only we know how.  

From archery and zip lining to creative arts and mini games, every aspect of SUN ESCAPE is like camp but will be indoors or in the late evening.

Even better then the activities will be the opportunity for our campers and their families to connect with others facing similar circumstances with the sun, some for the very first time.  

 

And parents, however you get there, we’ll cover the bill. For every family attending Sun Escape Weekend, Shadow Jumpers and the UPA will reimburse 100% of the cost.   

We want to make this all fun, no sun and no stress! 

Applications will be accepted in the order they are received. Team members will respond on a rolling basis and provide additional information after reviewing your application. For more on volunteering, visit our volunteer page.

Apply Now!

 


What's UP Doc? LIVE with Dr. Bruce Wang: February 24

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Join us on the Porphyria Together Facebook Group on Saturday, February 24 at noon to ask Porphyria Expert, Dr. Bruce Wang your porphyria questions!

Not able to send join us at that time? Send us the questions in advance to info@porphyria.org.

 

 

 


Porphyriapalooza Patient 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!

Mark your calendar for Porphyriapalooza 2024: Inaugural UPA Patient Weekend on September 13-15, 2024 in Chicago, IL

Stay tuned for details!

 

 


 

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.