Call for rare conditions drugs fund

[John_Mills]

Interesting article from the BBC this morning on Twitter regarding Rare Diseases in the UK.

bbc.co.uk/news/health-23930267

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Hi John, what an interesting article. I am learning about my genetic disaster slowly! I was diagnosed with vasculitis of the eye last year and since then, sjogren and mild Sle. One doctor told me last year how rare vasculitis is. Have you heard of this name, Bechet syndrome? Does that make any sense to you,or anyone on this site? Not sure where the 't' goes before the 'c' or where it is now after the 'e' , Bechet! I could swear i heard my Rheumatologist assistant say this to me last year. Anyway its never been said since. All i know is my dad had this blood vessel and arteries disease amoungst other things and now at 44 years old, so have i.

[John_Mills Volunteer]

This is the link to the VUK website about Behcets Disease Smurfette. It is usually pronounced Beshetts. if you would like to talk to me about Behcets Disease, please send me an email to [e-mail] vasculitis.org.uk/about-vas...

John

[AndrewT]

Dear John,

I didn't know that all the budgets for NHS treatments had been 'merged', In some ways maybe a good thing- perhaps??? I am yet to be convinced, like most of us no doubt!

By the way John did you read the 'post' by the person asking if, this 'forum', could produce a list of the abbreviations, we commonly use? A good point actually- even an 'old dog', like me, can sometimes wonder quite what someone else is 'on about'. Worth considering maybe?

Anyway give my love, to Susan please.

Kind regards

AndrewT