Raising Awareness on Rare Disease Day, February 28

To raise awareness of Rare Disease Day on February 28, nutrition expert Dr. Virginia Stallings will highlight the nutritional challenges and therapies for people living with one of those rare diseases, cystic fibrosis (CF). An in-depth discussion/presentation by Dr. Stallings, entitled, “Individualized Nutrition Therapy For People With Cystic Fibrosis: Gaining Or Losing Weight,” will be featured on the Cystic Fibrosis Research Inc. (CFRI) podcast, CF Community Voices at 1:00 pm EST.

Rare Disease Day, held annually on the final day of February, recognizes the 6,000+ rare diseases worldwide, 72 percent of which are genetic. More than 300 million people live with a rare disease across the globe. There are 30,000 people in the U.S. and 70,000 worldwide diagnosed with cystic fibrosis, managing its many debilitating effects on the respiratory and digestive systems.

Hosted by CFRI Executive Director Siri Vaeth, MSW, Dr. Stallings’ presentation will review the demographic trends for patients living with CF, the continuing need for non-pulmonary data, and efforts to treat fat malabsorption due to pancreatic insufficiency. She also will detail the promising results of Encala, a medical nutrition product to improve fat absorption in patients with CF and other pancreatic diseases such as chronic pancreatitis, pancreatic cancer and celiac disease. Shwachman-Diamond and Johanson-Blizzard Syndromes, additional rare diseases that cause fat malabsorption, may also benefit.

“The treatment of fat malabsorption is incomplete in most patients with cystic fibrosis,” noted Dr. Stallings. “Yet we know that optimizing nutritional status, growth and body composition improves important clinical outcomes. That’s why it’s increasingly important to individualize nutrition recommendations in cystic fibrosis care for food intake, enzyme dose and nutrition support.”

A board-certified nutrition pediatrician and Professor of Pediatrics at Children’s Hospital of Philadelphia (CHOP) and University of Pennsylvania Perelman School of Medicine, Dr. Stallings has worked in nutrition clinical care, training, and research for more than 30 years. She has made numerous research contributions to nutrition-related outcomes in children and adults with chronic illnesses including cystic fibrosis, sickle cell disease and HIV/AIDS.