Meetings & Events
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.
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.
Cutaneous Porphyrias Connect UP
Monthly | For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
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.
CEP & HEP Connect UP
Monthly | For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.
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.
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.
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.
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.
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.
Acute Porphyrias & Paralysis Connect UP
Join us for this special Connect UP for anyone who has experienced paralysis because of their acute hepatic porphyria.
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.
Acute Porphyrias Connect UP
Weekly | Join this 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.
Cutaneous Porphyrias Connect UP
Monthly | For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
Acute Porphyrias Connect UP
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.
Q&A: Nutrition and Porphyria
Nutritionist Isabel Palazon is taking your questions on porphyria & nutrition!
Porphyria Caregivers Connect UP
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.
Acute Porphyrias & Paralysis Connect UP
Join us for this special Connect UP for anyone who has experienced paralysis because of their acute hepatic porphyria.
Acute Porphyrias Connect UP
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.
Reflection & Prayer Connect UP
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.
Men with Acute Porphyrias Connect UP
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.
Acute Porphyrias Connect UP
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.
CEP & HEP Connect UP
For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.
Porphyria Caregivers Connect UP
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.
Acute Porphyrias Connect UP
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.
Cutaneous Porphyrias Connect UP
For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
Acute Porphyrias Connect UP
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.
Acute Porphyrias Connect UP
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.
Bitopertin Delayed: What’s Next Community Call
Learn more about FDA is asking for, what Disc Medicine plans to do next, and what this means for patients and families right now. There will be time for questions and for your voice to be heard as we move forward together.
Men with Acute Porphyrias Connect UP
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.
CEP: Living Stronger Together Weekend
Join us for an inspiring weekend dedicated to our CEP community. It is a place to connect, share experiences, learn, and find support
Acute Porphyrias Connect UP
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.
CEP & HEP Connect UP
For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.
Q&A: Acute Hepatic Porphyrias Neuropathy and Pain
Back by Popular Demand ! Dr. Mohammed Kazamel, Mayo Clinic porphyria expert and neurologist answers your questions live on Zoom.
Cutaneous Porphyrias Connect UP
For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.
Drug Safety & Acute Hepatic Porphyrias
Porphyria expert Dr. Bruce Wang (UCSF) and patient advocate Nicolas Frias walk through the basics of using the Drug Safety database so you can feel more confident when navigating medication decisions with AHP.
AHP Breathwork Connect UP
For acute porphyria (AIP, HCP, VP & ADP) patients! Connect with others who understand what you’re going through. In this session we’ll be exploring breathwork with host Scarlett.

