- Join the Facebook Group for Congenital Myasthenic Syndrome to talk to other parents of children with Congenital Myasthenic Syndrome and hear from adults currently living with the disease.
- Connect with other moms of rare/complex medical needs children on Mommies Of Miracles
- Contact your local Muscular Dystrophy Association Chapter to find services & support.
- If you live in Illinois and you are in need of equipment for your special needs child, contact Lexi's Closet.
1. Contact your health insurance provider to request a case worker for medically complex cases. We recently did this and after a few weeks, we were assigned a case worker from our insurance company. She is fabulous because she is a registered nurse and she does a great job of following up with us for resources when insurance does not cover something.
