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
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.
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 | For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.
Únete a nuestra próxima reunión Conéctate, un espacio seguro y acogedor para personas que viven con Porfiria (cualquier tipo de porfiria)
Monthly | Join us for Guided Meditation, a gentle Connect Up session led by Scarlett Dias, designed to help you slow down, release tension, and reconnect with yourself. Scarlett will guide you into a calming space where your mind and body can rest, reset, and restore.
Un espacio de apoyo y conversación para cuidadores y familiares de personas con porfiria. Comparte tus experiencias, escucha a otros cuidadores y conecta con personas que entienden este camino.
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 | For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
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 | 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| 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.
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.
Sign Up for Connect UP
Please provide the following information to help us match you with a Connect UP group that fits you.

