Canadian Association for Porphyria attends the International Congress of Porphyrins and Porphyrias in Pamplona, Spain
(L to R) CAP members Derry Wilcox (Treasurer), Jeannie Reimer (Secretary) and Michelle Capon (President) at the International Congress of Porphyrins and Porphyrias in Pamplona, Spain.
The International Congress of Porphyrins and Porphyrias (ICPP) is a major international conference that brings together porphyria researchers, doctors, patient groups and industry stakeholders to present on the latest advancements in porphyria research, treatment and care.
The Canadian Association for Porphyria was fortunate to have three members of the CAP team attend the ICPP. Some of the highlights from the conference including:
Connecting with our fellow patient groups from around the world
We met in person with our fellow patient groups from around the world and discuss global priorities from the porphyria community at a meeting of the Global Porphyria Advocacy Coalition (GPAC).
As members of GPAC we’ll be involved in global initiatives to promote awareness, improve mental health and increase access to treatments! It was also wonderful to connect with so many members of the international community!
Updates on treatments: existing and under development
There were many exciting treatment updates including:
A new potential treatment for Congenital Erythropoietic Porphyria (CEP) that is expected to begin clinical trials in the upcoming year
Ongoing clinical trials for EPP (Disc Medicine’s bitopertin, Mitsubishi-Tanabe’s MT-7117), and a new potential treatment for EPP is pre-clinical trials
A potential gene-editing treatment for Acute Intermittent Porphyria (AIP) that is pre-clinical trials
Use of Scenesse as a potential treatment for VP skin symptoms
Real world experience on the use of Givlaari
Improving understanding of porphyria treatment and care
Research that will make a difference in porphyria care and diagnosis was presented.
We were particularly interested in research on:
A potential connection between adrenal insufficiency and acute intermittent porphyria attacks
New approaches to liver screening for people with EPP/XLP
Ongoing research on the use and safety of oral contraceptives and hormone replacement therapy in acute hepatic porphyrias (AIP, HCP, VP)
Effectiveness of some new types of sunscreen for EPP/XLP