Are you a rare patient or caregiver with concerns related to the COVID-19 outbreak? Do you need strategies for coping, staying healthy, and reducing anxiety during this uncertain period?
NORD (National Organization for Rare Disorders, Inc.) is hosting a special webinar on Tuesday, March 31, at 2:00 p.m. EDT to provide guidance on living with a rare disease and maintaining your physical and mental health in the time of COVID-19. This webinar is perfect for patients, caregivers, advocates, and others.
The webinar will feature Dr. Marshall Summar, Chief, Division of Genetics and Metabolism, and Director of the Rare Disease Institute at Children’s National Hospital; Dr. Bernhard Wiederman, Infectious Disease Specialist at Children’s National Hospital; and Dr. Albert Freedman, Counseling Psychologist and rare parent.
Register for the webinar at: https://globalmeetwebinar.webcasts.com/starthere.jsp?ei=1295204
The combined Sanfilippo Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review. These advocacy group is working closely with the FDA on the...