Connect UP

A welcoming space for youth with porphyria to connect with others who understand, share experiences, talk about the challenges of navigating everyday life with porphyria, and simply be themselves. Facilitated by Molly, a UPA Junior Ambassador.

Monthly | For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.

Monthly| Living with porphyria can already feel isolating. For LGBTQIA+ individuals, it can be especially meaningful to connect in a space where both health and identity are met with care and understanding. Hosted by Elsie, Tommy and Ollie.

Join us for a Connect UP focused on positive thinking and finding ways to bring more positivity into everyday life. Hosted by Sean, who lives with VP.

Weekly | Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Monthly | A supportive space for people in their late teens through twenties living with porphyria to connect, share experiences, and build community. Moderated by Hailey Brionez, this group offers a place to feel understood and supported by others navigating similar journeys.

Monthly | Join us for an evening/late afternoon Connect Up for people living with Acute Hepatic Porphyria (AHP, includes AIP, HCP, VP & ADP)! This a supportive and understanding space to connect, share, and feel seen.

Weekly | Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Monthly | A special Connect UP for anyone who has experienced paralysis because of their acute hepatic porphyria.

Monthly | For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.

Monthly | Join us for a special Connect Up centered on prayer, reflection, and spiritual support, led by Shawn Willis. This gathering offers a peaceful space to come together, share intentions, and find comfort in community. Whether you’d like to pray, listen, or simply be present, all are welcome.

Monthly | You're invited to a special Connect Up for men living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP), a supportive and confidential space created to connect with others who understand the unique challenges of living with AHP.

Monthly | For all those with a loved one with porphyria. Whether you are a parent, partner, sibling, child or friend, supporting a someone with porphyria can be hard. Connect with others who understand your journey.