Report by Michael and Jane Bennett
The Medway Neurological Network organised a get together for Rare Disease Day, Friday 28th February, a week early on Friday 21st February, which we were pleased to join.
We all met in Jaspers Café, in Rochester Community Hub which is one of the Neuro-Cafes regularly open to support and reduce isolation.
During the afternoon, we chatted with representatives from Ataxia, Motor Neurone Disease Association, Parkinson’s and Huntingdon’s Disease.
As well as spending time liaising with other charities, Acacia Tabitah, from Kent & Medway NHS, gave an update on her work relating to medication and patients’ needs. This was followed by an interesting talk from Laura Macdonald, Chief Product and Partnerships Officer at Carecircle, who are trying to create a database for the 7000 different rare diseases to assist doctors with their diagnosis.
The High Sheriff of Kent, Dr Gill Fargher, being an ex-GP, was particularly interested in hearing some of the plights of those living with a rare neurological disease.
We are looking forward to attending the Medway Neuro Tech Fair on 4th September 2025.