AHP Breathwork Connect UP

Join trauma-informed trainer and facilitator, Julie Wells, to explore the connection between chronic illness and emotional well-being, with a focus on the unique challenges faced by people living with porphyria.

Join porphyria expert Bruce Wang, MD to learn more about the connection between liver health and acute hepatic porphyrias (AIP, HCP, VP & ADP).

United Porphyrias Association hosts GondolaBio to learn about the upcoming PATHWAY clinical trial for PORT-77, a new potential treatment for EPP & XLP.

Join us for an exclusive, live interview with Dr. Herbert Bonkovsky, the pioneering physician and researcher whose work has helped shape more than five decades of progress in porphyria research, diagnosis, and treatment.

Join the UPA and a panel of knowledgeable health care professionals to learn about your porphyria, treatment options, navigating care and more!

Join porphyria experts Dr. Manisha Balwani of Mount Sinai and Hetanshi Naik, for a conversation about the new acute porphyria guidelines and what patients and families should know.

Special for Global Porphyria Day! Dr. Bruce Wang, porphyria expert, will be took your questions live on Facebook.

Join us for a weekend of ALL FUN and NO SUN with the whole family!

Nutritionist Isabel Palazon is taking your questions on porphyria & nutrition!

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.

Join us for an inspiring weekend dedicated to our CEP community. It is a place to connect, share experiences, learn, and find support

Back by Popular Demand ! Dr. Mohammed Kazamel, Mayo Clinic porphyria expert and neurologist answers your questions live on Zoom.

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.

Join neurologist and porphyria expert Dr. Mohamed Kazamel for an informative webinar discussing the causes of chronic porphyria symptoms, which treatments are effective and strategies for managing symptoms day-to-day.

Join porphyria expert Dr. Amy Dickey to discuss when a transplant may be considered, what the process involves, potential risks and outcomes, and life after surgery. You’ll also hear directly from patients who have undergone transplantation as they share their personal experiences and perspectives. 

Dr. Bruce Wang, porphyria expert will be taking your questions live on Facebook.

This special meeting will be attended by the US Food and Drug Administration (FDA) and will highlight patient experiences to deepen knowledge and understanding of Congenital Erythropoietic Porphyria (CEP) and support the development of treatments for CEP.

Join Ironman athlete and AIP patient Lauren Thompson for a discussion on staying active when you have porphyria. We'll be sharing strategies on nutrition, listening to your body and more.

Join Porphyria Expert, John Phillips, PhD and fellow porphyria patient Lina Rebeiz as we delve into the science behind porphyria.

Dr. Bruce Wang, porphyria expert took your questions live on Facebook for Global Porphyria Day!

Join us for a weekend of ALL FUN and NO SUN with the whole family!