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

Featured

Jul 15

Acute Porphyrias Connect UP

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.

Jul 16

Pacientes de porfiria

Únete a nuestra próxima reunión Conéctate, un espacio seguro y acogedor para personas que viven con Porfiria (cualquier tipo de porfiria)

Jul 16

Guided Meditation Connect UP

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.

Jul 17

Cuidadores de Personas con Porfiria

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.

Jul 18

Porphyria Caregivers Connect UP

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.

Jul 19

Cutaneous Porphyrias Connect UP

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

Jul 19

Men with Acute Porphyrias Connect UP

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.

Jul 21

Reflection & Prayer Connect UP

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.

Jul 22

Acute Porphyrias Connect UP

Jul 27

LGBTQIA+ Connect UP

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.

Jul 31

Young AHP Connect UP

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.