30th October - 1st November 2020 - Amy and Friends Annual Family/Medical Conference:
Taking place at St Davids Hotel, Buckley, North Wales CH5 3YB.
Please Click Here for registration and please Click Here to see previous years.
Rare Disease Clinic been up and running for a year.
The multidisciplinary clinic has been up and running for 1 year. Clinic has allowed our families and CS - TTD patients to be seen by a wonderful team who specialise in CS and TTD, Dermatology, Neurology, Ophthalmology, Dentistry, Dietary and Genetics.
Amy and Friends is an integral part of the service giving feedback on the patient experience and also by providing financial assistance for patients to attend clinic. We accompany families and provide volunteers to help keep children fully entertained and supported.
NHS England funded the Cockayne Syndrome -Trichothiodystrophy (CS-TTD) multidisciplinary clinic in February 2019 to assist consultants in caring for their CS-TTD patients. It provides services including Dermatology, Neurology, Ophthalmology, Dentistry, Dietitiary and Genetics. It is based at St Thomas’ Hospital in London and diagnostic tests are led by Professor Alan Lehmann from the University of Sussex and the clinical lead for the service is Dr Shehla Mohammed . Amy and Friends is an integral part of the service giving feedback on the patient experience of the service and also by providing financial assistance for patients to attend the clinic.
February 2019 - St Thomas’ Hospital London working in conjunction with Amy and Friends and NHS England opens the first multidisciplinary clinic for Cockayne Syndrome/TTD in the world! Our biggest achievement to date!