As an update to my post the other day...
I have started a Facebook group called Rare Love. It was created specifically for families whose children have rare syndromes or diseases, because there often is no support group for them! While we may not deal with the same symptoms or daily issues, we all have felt isolated. My hope is that we can encourage and support one another.
Right now, there are already 24 people in the group! We're sharing our stories, inspirational quotes, and a few pictures. It's already encouraged me quite a bit to know that my feelings are shared by others.
If your child has a rare syndrome or disease, look Rare Love up on Facebook! This is a "closed" (private) group, so you will need to ask to join (in the upper right hand corner of the RL page). If you know someone who could benefit from the support, please feel free to pass this information along!