Niemann Pick Canada was a proud collaborator with the Ara Parseghian Medical Research Fund at Notre Dame and other NPC foundations to bring forward the Voice of the Patient Report by means of the Patient Focused Drug Development meeting which took place in Maryland in March 2018. This report summarizes the meeting and input from NPC families, patients and caregivers around the world to the U.S. Food and Drug Administration to assist with understanding what is important to patients and families to guide drug approval. Although this is a U.S. based initiative, the U.S. FDA is dedicated to improving treatments and opportunity to patients with rare disease. As an ultra rare disease it is important to bring as many voices together as we work towards better treatments for NPC. 
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