The American Porphyria Foundation and the Porphyrias Consortium (PC) hosted a half-day medical meeting this past Saturday, January 18th, 2020. The meeting included both US and European porphyria experts along with the current treating physician lead for Kam (shown above, with APF Executive Director, Kristen Wheeden), Dr. Alex Lion from University of Indiana. The purpose of the meeting was to focus on a form of Acute Intermittent Porphyria, HDAIP – Homozygous Dominant Acute Intermittent Porphyria, which is a progressive ultra-rare variant.
The experts followed a robust agenda that sought to discuss current literature/cases and to consider potential therapeutic and quality of life possibilities. Current mouse model findings were examined, and gene therapy options were reviewed.
This meeting was sponsored by friends and family supporting sweet Kam Kadinger - age 3. Kam’s family is grateful to the dedicated physicians who gathered to discuss HDAIP. “We don’t know what the future holds for Kam,” shared his mom, Amanda Jordan, “but we do know that we made a difference today by bringing together the greatest minds in Porphyria.”
A family, a foundation, and a team of dedicated physicians gathered on a weekend to brainstorm a disease that currently affects two known children in the US – it was truly an incredible experience and shows that every child does matter.