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Saturday 23rd March, 2019 - London Meeting and AGM

Posted: Sat 23 Feb 2019 12:19 pm
by Lia Williams
Our London Speaker Meeting and AGM will take place on on Saturday 23rd March, 2019 at 11:00am in the lecture theatre of the Moorfields Clinical Tutorial Unit which is now located at 15 Ebenezer Street, N1 7NP (go up Provost Street which is across the road from the main hospital and you’ll find 15 Ebenezer Street on the next corner).

Our guest speaker is Alison Hardcastle, Professor of Molecular Genetics at the Institute of Ophthalmology Faculty of Brain Sciences, who will talk about the Moorfields genetic study.

More details can be found here: ... g-and-agm/

Re: Saturday 23rd March, 2019 - London Meeting and AGM

Posted: Mon 25 Feb 2019 8:09 pm
by space_cadet
This makes me sad for many reasons

a) The KC group is supposedly a National Charity and yet seems highly London centric when we know their are people with KC not just within the M25 and I know in the past AGM n conferences have occurred away from London making it more accessible for many to attend
b) itd be refreshing to actually hear properly from those of us affected along side medical people as we arethe ones whom live it, they have slit lamp n text book experience but very few have lived actual experience which we do, so surely we are the professionals when it comes to our own condtiion?
c) Wouldn't it be refreshing to hear professionals actually answer with honestyy the questions they try their best to dodge, and not get a woe is you look when you admit yup KC can n does cause legal sight registration blindness...

it is good don't get me wrong to hear from the powers that be, but why can't the group/ charity actually stick to its objectives and campaign on our behalves to be our voice on a national level, as I know I am surely not the only person who wants someone to be asking the questions i ask n get the answers not only for myself but for many of you too.

the longer we remain silent , the longer the stigma will continue and by talking we can share experience lived experience whcih speaks far louder than any slit lamp ever could

Re: Saturday 23rd March, 2019 - London Meeting and AGM

Posted: Mon 25 Feb 2019 9:08 pm
by Lia Williams
The latest newsletter describes lots of things that have been going on in the last year - not all of them in London. ... newpub.pdf

The newsletter reports on the last conference, which was held in Birmingham, and the videos from that conference can be found here: ... deos-2018/