Helpful Resources

Our aim is to enable families to access the best possible care and information. Below is a list of links to other websites which you may find useful

SCN8A

• Cute Syndrome Foundation 

• SCN8A Italia

• Shay Emma Hammer Research Foundation

• CSF Clinician Guide (download & print)

Epilepsy

• Matthews Friends 

• Daisy Garland 

• Epilepsy Action

• Epilepsy Sparks

• SUDEP Action 

• Rare Revolution magazine

Learning difficulties and autism

• Mencap

• Scope

• Genetic Alliance 

Sibling Support Charities

• Sibs

Ketogenic Diet

• Matthews Friends  

• Daisy Garland 

Grants and family support

• Family Fund

• New Life (equipment grants)

• Whizz Kids

• React Charity  grants up to £500 

• Jack and Jill (Ireland - nursing care)