If you have a family member who has been diagnosed with ATR-X, I highly suggest joining the closed Facebook group, ATR-X. You must be approved and will be added once the admins confirm you have a connection with ATR-X.

If you live in the US, there is also an ATR-X American Families Facebook group that facilitates a yearly meetup and other geo-specific conversations. I suggest joining both, but most conversations around the syndrome take place in the main ATR-X group.

You can also email me at allaboutatrx@gmail.com