As part of my role as a European patient advocate for rare epilepsies, last month I was honoured to be invited to attend the 4th European Reference Networks Conference alongside several other representatives from EpiCARE ERN – the European Reference Network for rare and complex epilepsies. EpiCARE is one of

Glad Jackie and I made it to the The Rare Disease Day Event at Birmingham Children’s Hospital on 1st March 2018. Gosh it was cold! A great day which got cut short due to the weather. I met a young man who was studying Learning Difficulties at Stoke and told him

On 23rd Oct, Dawn and Allison had the fantastic opportunity to attend the Cambridge Rare Disease Network (CRDN) Summit 2017 at Robinson College, Cambridge. On arrival we handed over our patient journey posters (see below) and got ourselves signed in to some new tech to follow the conference on our

Guinness World Record Holder for ‘The Longest Magic Show’, Richard T Smith, entertained our families during our gala dinner at our families conference: Richard kindly donated the proceeds of his fee for the evening to MJVC – the Magicians, Jugglers and Ventriloquist Club – to help young, upcoming magicians hone

One of our r(20) families based in Scotland, Chris and Claire Sullivan were inspired following our families conference to instigate their very own year long fundraising initiative, with an target of £20,000 for our new Research Fund. They have recruited the support of family, friends and the local community and