Struggling to find support facing baby diagnosis (poss genetic syndrome/condition)

[amolbd]

I have been pushing to get my daughter assessed since she was five weeks old. I've managed to get to a point where we have a brain MRI showing her cerebellar vermis is underdeveloped and genetics are pointing towards Joubert Syndrome (v rare). I've been shocked at how many times I've been told to "wait and see" by NHS professionals and how little psychological support there is for us as parents. Has anyone got recommendations for places to go/contact for support or advice when dealing with unexpected child diagnoses or conditions?

Have you looked at Unique?

Thanks so much for this, I have made contact with Unique and signed up for them. They are a great resource. It does baffle me that no one from my council or NHS has suggested them, given the state seems unable to provide such support. Is anyone else finding state support better?