Excellent day - interesting, interactive and informative Hopefully there will be a write up in the next VUK newsletter
"Let's keep the snow ball we started rolling growing to make sure we get the best outcomes for rare disease patients" - Alastair Kent (Director Genetic Alliance UK Rare Disease UK )
"The Rare Disease Strategy will not be buried... We are watching and will be holding their feet to the fire" Alastair Kent
"Knowledge is Power A well informed and educated patient is more able to manage and cope with their illness" - John Mills (Chairman Vasculitis UK)
"Why is a diagnosis important? It gives you a starting point" - "People are more accepting and sympathetic now my daughter has a diagnosis. Professionals are more supportive" - Edward Sherley-Price (parent of a child recently diagnosed with a rare genetic condition)
Results of the Genomic Sequencing Survey - 75% in favour but lots of questions being asked about 'ownership of the data'