Symposium Offers Research, Treatment Updates

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by Marisa Wexler MS |

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Experts will discuss the latest research related to porphyria, as well as current and emerging treatments and management strategies, at an upcoming symposium.

The event will include a free patient day, open to both in-person and virtual attendees.

“The Porphyrias Symposium … will bring together Porphyrias experts, treating physicians and patients to learn the latest developments in the eight major porphyrias and their rare variants,” Robert Desnick MD, PhD, told Porphyria News. Desnick is an organizer and the co-principal investigator of the NIH Porphyria Consortium.

According to Desnick, the symposium will focus mainly on the genetics and the underlying mechanisms of porphyrias, as well as “new treatments in development and recently approved for patients.”

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The symposium, “Heme Biosynthesis and the Porphyrias 2021: Consensus Diagnoses, Variant Disorders, New & Emerging Therapies,” is taking place Oct. 15–17 at the Hyatt Regency Schaumburg near the Chicago O’Hare International Airport in Illinois. The in-person event is putting in place several precautions to help keep attendees safe during the pandemic. Among other safety measures, all attendees are required to show proof of having been vaccinated against COVID-19.

The symposium will include seven scientific sessions over the course of its two-and-a-half days. A full agenda of the event detailing all sessions is available here.

The first session, which begins Oct. 15 at 1 p.m., will be an introduction to porphyria and the heme biosynthesis pathway — the signaling cascade that leads to the production of heme, a molecule needed to transport oxygen. Disruptions in this pathway are the root cause of porphyrias.

Recent research on heme biosynthesis will be discussed at a separate session the morning of Oct. 16.

Other sessions will focus on different types of porphyria. An Oct. 15 afternoon session will focus on acute hepatic porphyrias; on Oct. 16 there will be separate sessions spotlighting porphyria cutanea tarda and erythropoietic porphyrias.

Oct. 17 will feature two scientific sessions, one centering on emerging treatments for the disease, and another on how porphyria is diagnosed.

A patient day is planned for Oct. 17 and is aimed at people living with the disease, caregivers, family and friends. It will offer opportunities to learn about porphyria and to meet other members of this rare disease community. Among other events that day will be discussions about how to get involved in research, an overview of emerging science, and a question-and-answer session with a panel of expert physicians.

“This critical symposium is an opportunity for researchers to collaborate and network and for clinicians to learn first-hand from porphyria experts about heme biosynthesis and the porphyrias,” said Kristen Wheeden, executive director of the American Porphyria Foundation.

“There is a robust agenda that will offer an educational opportunity for all attendees. The end goal is to better serve the patient community through diagnostics, disease management, and therapeutics,” Wheeden added.

Registration for the scientific symposium is available online. The cost of registration is $475 for physicians, nurses, students, patients, and patient advocates. For industry professionals, the registration fee is $575.

A separate registration for the patient day also is available online. The patient day is free and it can be attended either in-person or virtually.