Connect UP

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.

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.

Join Sean for a special Connect UP for those living with VP and HCP!

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

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 | 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.

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.

Connect and celebrate with fellow LGBTQIA+ members of porphyria community. Hosted by Elsie, Tommy and Ollie.

A supportive space for people in their teens and early twenties living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP and ADP) 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.