New here, has anyone else been diagnosed with 15q11.2 microdeletion?

Hey everyone, im brand new here..firstly i want to apologise if what ive written is confusing in anyway but this is basically all the information ive recieved..I was diagnosed with severe ADHD/ADD/ODD around the age of 8 i think. Recently my 2 of my 4 children were diagnosed with ADHD/ADD/ODD and after having genetic testing done it showed they also suffer from Burnside-Butler syndrome (15q11.2 microdeletion) and as it is a very rare hereditary genetic condition i was tested and at the age of 31 I've also just been diagnosed with Burnside-Butler Syndrome (AKA 15q11.2 microdeletion disorder) To add to a stressful situation im having difficulty finding any doctor or medical professional who knows anything regarding this genetic condition other than its name and its only just been medically recognised. I have no idea what the next step is or where to go for help and have become so overwhelmed I'm honestly at a loss 😖 if anyone has any suggestions, thoughts, ideas etc I'd be extremely grateful and appreciative thankyou! I've attached the my test diagnosis (the only thing I've been given regarding it)