PAF Exhibits at the 40th Annual SIMD Meeting – March 11 -14, 2018,  San Diego, CA

Jill Chertow represented PAF and the PA Community at the 40th Annual Society of Inherited Metabolic Disorders (SIMD) on March 11-14th in San Diego, California.   PAF partnered with the National Urea Cycle Disorders Foundation (NUCDF) on our exhibit booth to educate providers about hyperammonemia. PAF’s goal was also to network with PAF clinicians and attract researchers to collaborate with PAF on studies for PA .   The meeting was a great opportunity to hear about new research in metabolic disorders, newborn screening updates and issues about access and cost of drug therapies. Elaina Jurecki, M.S., R.D. presented on “Protein Intake Recommendations for Propionic Acidemia in the Evidence-based SERN-GMDI  Management Guidelines.”  Nutrition guidelines continue to be a hot topic.  Interesting poster topics included the use of medical food, liver transplant, and anaplerotic therapy.

During the breaks and meals there was time to network with physicians, dietitians, researchers, medical food providers, advocacy groups, and industry.     There is hope for a number of potential new therapies in mRNA, gene therapy, enzyme replacement therapy and/or new medications for the first time.