Connect UP
You are not alone
Connect Up are small group meetings for patients and caregivers to connect and socialize with others in a safe and inclusive environment. Connect UP groups are peer-led and offered regularly over Zoom.
Sign up to be matched to a group of your peers. Groups are set up based on types of porphyria and other experiences (ex. LGBTQ+).
UPcoming Connect UPs
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.
For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
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.
For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.
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.
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.
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.
Sign Up for Connect UP
Please provide the following information to help us match you with a Connect UP group that fits you.

