The Balancing Act Explores Rare Diseases
February 28, 2019
Opening Up About Rare Diseases
On this special edition of The Balancing Act on Rare Disease Day, we are taking a look at the lives of patients who suffer from lesser-known conditions. In fact, approximately one in 10 Americans battle a rare disease. In the U.S., a disease is considered rare if it affects fewer than 200,000 people. If you’re struggling, know you are not alone.
First up, understanding Pheochromocytoma and Paraganglioma: rare neuroendocrine tumors that can dramatically impact survival in people of all ages.
Next, we’re learning about Pompe disease, a rare neuromuscular disorder affecting the hips, thighs, and shoulders, as well as muscles in the lungs. Sarah Gonzalez, head of medical diagnostics at Sanofi Genzyme, discusses how genetic testing plays an important role in obtaining a diagnosis.
Then, The Balancing Act welcomes back Ilana Jacqueline to discuss her brave journey as she continues battling a rare disease. Not only is she living, she’s thriving–but the fight has not been easy.
Behind the Mystery is a special segment dedicated to revolutionizing the way the health care system works for those suffering from a rare and genetic disorder.
Behind the Mystery takes a closer look at one of the two types of Polycystic Kidney disease. Autosomal Dominant Polycystic Kidney Disease, or ADPKD, is a rare, genetic condition.
Behind the Mystery takes a closer look at Blastic Plasmacytoid Dendritic Cell Neoplasm, a rare disease that is often misdiagnosed and affects at least 500 to 1,000 patients each year in the U.S.