Same but different….rare as Unicorn 💩???

This year 28th February 2018 is the worldwide celebration of Rare Disease Day.  The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate. Every year since, countries across the world have united to raise awareness of… Continue reading Same but different….rare as Unicorn 💩???

“There are known knowns”…

” There are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don’t know we don’t know. ”  Credit: Secretary of Defence Feb 2002… Continue reading “There are known knowns”…

Shiny happy people….

I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music.  Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories,… Continue reading Shiny happy people….

D-Day….Red shoes Part 2…

Yesterday was D-Day – The Day I spoke at the Rare Diseases UK AGM in front of various learned bods and alliances of support groups etc. I have had so many wonderful messages, e-mails and texts asking how it went and am truly overwhelmed by the support; it means a lot. Since everyone was still… Continue reading D-Day….Red shoes Part 2…