Hello my son was diagnosed with renpenning about a year ago, he is 2 now. We live in New Jersey. If you would like to email me, I would love to talk. My email is katie.mccall.33@gmail.com

Hi my son was diagnosed on 22nd July 2014. You're the first person I found after 6days attached to Google! Found u on Facebook :) check your 'other' messages.... I was so excited :) Finn is 5. I haven't told my family the diagnosis because it's complicated, don't want to give them something else to argue about and because it's so rare they could find something I'd written and I want to avoid that xx I started to set up some group/pages on fb, ont me so far and my hubby https://m.facebook.com/PQBP1RenpenningSyndromeXp11.23del?ref=bookmark

Hi! I know, you two did converse in 2014 but I stumbled upon you just now. Perhaps you are still active in some sort of way. My son Lars, now 2,5 yrs was diagnoesed with Renpenning in april after almost one year of searching a cause for his slow development. I am the carrier. Due to the rareness it would be very nice to listen to other families. My email is kiki1112@gmx.de