If you feel distressed and need urgent help or advice, please contact someone as soon as possible, such as Samaritans on 116 123 or visit the Samaritans website, or call Mind on 0300 123 3393 or visit the Mind website


Families of children with rare neurogenetic disorders have voiced that they would benefit most from resources supporting them to manage their child's education and care. In light of this, we have provided some useful resources below which may be of benefit to you or a family you know.


 Manging shielding/social isolation/social distancing with my child: 

Dealing with my own worries : 

Accessing healthcare: 



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