Thank you John, for posting the Facebook link, I don’t know why I didn’t even consider doing that..

Would you have any information on HOW to get the attention of a provider, group of providers, research team, ANYONE who would take interest in this condition… with it being so rare there is almost no information/research..but since my daughters RCA two years ago there have been dozens of others that have followed her…it’s clearly becoming less rare…these patients and families need help.