NF1 and CPT Rare Congenital (Gene Spontaneous Mutation)

This title probably might give you a shock with what’s this all about. As a ftm, having a child with rare congenital disease is scary and helpless. Common congenital such as Down syndrome, spinal and muscle development have been seen now and then. But for NF1 is uncommon hence I am here looking for potential support group if any of your child is diagnosed with NF1 or NF1 with related gene mutation. Or any of you heard of such support group, do let me know. This is not a common disease in eastern side of the world but it is definitely hitting many in the western country. Research, medication and intervention work are well laid out with PD’s support and guidance there. However here in the eastern side, medical teams are still pretty much developing and learning from those new research done in the US. I’m a baby massage instructor, I hope I can lend a helping in supporting those in need yet also to find a support group for my own child. Do spread the news if anyone is in need with any kind of support.