We have worked together with ASSERT, the UK patient support group for Angelman Syndrome to set up a multidisciplinary Angelman Syndrome Clinic where we see Angelman patients of all ages. Our team includes:
|Professor Jill Clayton-Smith||Clinical geneticist|
|Dr Dan Hindley||Consultant paediatrician with specialist expertise in epilepsy and neurorehabilitation|
|Dr Eric Taylor||Clinical psychologist|
|Ms Helen Jameson||Epilepsy specialist nurse|
|Ms Jenny Pemberton||Speech and language therapist|
|Ms Clare Convery||Physiotherapist|
|Mrs Sian Cartwright||Trustee ASSERT and parent to Angelman syndrome child|
Each family attending our clinic is offered a one hour slot for discussion and following the clinic the family are provided with a comprehensive summary of the discussion and management recommendations. Referrals to the clinic should be made in the usual way to Professor Jill Clayton-Smith. We can see only three families per clinic, so waiting times can be long.
Through taking a multidisciplinary approach to Angelman Syndrome in the clinic we aim to benefit families by providing high quality information, learn from the families we meet and from each other and facilitate development of research collaborations, clinical trials and data collection through our Angelman Syndrome Register.
The Angelman Syndrome Questionnaire we use to gather information from patients prior to clinic can be found here: (insert link)