Yesterday 23 April saw a day organised for patients and families of this rare condition to provide information, support, networking and provide updates on current research at the UCL Institute of Ophthalmology (UCL IoO).
Organised by Dr Amanda Carr, UCL IoO, Best Disease Day brought together patients keen to find out more about many different aspects of their disease. Initially planned as a small event, interested people far outweighed the capacity and therefore the event grew to a much larger scale. For those unable to attend, the event was filmed and access to this film will be available shortly.
The day incorporated a mix of clinical perspectives of the disease as well as the history around how it was discovered. These presentations were given by prominent speakers such as Professor Pete Coffey and Professor Andrew Webster from UCL IoO.
The genetics and the mutations that cause retinal diseases were also presented by Monica Armengol from Moorfields Eye Hospital and Dr Alice Davidson from UCL IoO. This provided patients valuable background information from experts that they wouldn’t normally have access to.
A key part of the agenda was to ensure that the patients were aware of the support available to them and how they can access that support. Coupled with this was a presentation demonstrating how being involved in research can be beneficial for patients and for the future. A patient was able to provide his experiences of living a positive life with the disease as he explained that being part of supporting others and being involved in research had helped him to come to terms with his impairment.
Importantly, the talks moved onto therapies and treatments currently being investigated. These presentations were delivered by Dr Amanda Carr and Dr Britte Nommiste from UCL IoO and Professor Lyndon da Cruz from Moorfields Eye Hospital. They discussed stem cell investigations and the development of gene and genomic therapies including recent discoveries. Professor da Cruz talked about future prospects while highlighting recent successes with The London Project to Cure Blindness.
The afternoon sessions involved tours of the labs and facilities where the experiments and research is being carried out.
About Best Disease
Best Disease is an inherited form of macular degeneration and is also known as vitelliform macular dystrophy. It is characterised by loss of central vision and the ability to perceive colour and detail.
The disease was first described by Adams in 1883, but was named by Dr Friedrich Best in 1905. Currently there is no treatment or cure for Best disease.