Part 1 (Pages 6 – 17)
About Dravet Syndrome
Jazz Pharmaceuticals provided funding for this guide via an unrestricted grant. Jazz had no other involvement in the development or content of the guide.
Pages 42-53
Page 43
Medications
A summary of medications that your medical team might prescribe is included on our website: click here
Page 45
Ketogenic diet
Matthew’s Friends: a charity specialising in all types of ketogenic dietary therapy
Page 46
Social/Play therapy
British Association of Play Therapists: more information on play therapy
Page 48
You have the right to ask for a referral for a second opinion
If you’re finding it difficult to get a referral you need to speak to – England or Wales: the NHS Patient Advice and Liaison Service (PALS) in your local hospital | Scotland: Patient Advice & Support Service (PASS) | Northern Ireland: Patient & Client Council (PCC)
Page 50
Communication passports
Information about creating a communications passport
Page 51
Emergency medications
A list of medications is included on our website: click here
You can find out more about emergency protocols on our website: click here
Part 2 (Pages 18 – 41)
Characteristics of Dravet Syndrome
Part 4 (Pages 54 – 95)
Living with Dravet Syndrome