#Momvocate tip: Ask questions until you understand your child's condition and care. This is especially hard to do during a time of #COVID19. But it is a Dr's professional ethical obligation to communicate with you in a way you understand. 1/

Sometimes a gentle reminder of this helps. Especially if you are communicating over the phone about a #raredisease and having a hard time connecting w/the Dr or specialist If you have questions and someone picks up the phone & tries to hurry you off, explain that...2/

1. You know they are *all* working very hard under very difficult circumstances. You appreciate that. & 2. You are likewise operating under very difficult circumstances and you need to understand what's happening. It is your doctor's ethical obligation to ensure you do. 3/

But this is very important: be as nice and empathetic as you can. I know you're scared if you're worried about your kid. This is *the best* way to get info, & #Momvocates with #RareDisease kiddos do what has to be done. Flies with honey and all that... /Fin