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? Please join NORD for a special webinar featuring 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, for 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, students and the public.
Register for the FREE Webinar
Tuesday, March 31
2:00pm – 3:00pm EDT
Click here to register
i am glad you are doing this. I did see a draft statement with dr. antonie kline that highly concerned me, as i believe it was not quite right or clear. While having Cornelia de Lange syndrome diagnosis may not necessarily make one more vulnerable, there are so many aspects of syndrome that may make managing the virus risk so much more challenging – not just for parents/guardian, but also medical professionals. Co-morbid is a medical/technical term, but right now, too techie. Small airways,ENT issues,reflux/aspiration pneumonia, intellectual disabilities/autism. I know you have right heart/intent, but draft statement, if used, minimizes the challenge/risks, and needs more plain language. You can do better. Nancy Drach, mom of Brian, 26.