Yes we made it to the RNIB section!!!

General forum for the UK Keratoconus and self-help group members.

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Sweet
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Yes we made it to the RNIB section!!!

Postby Sweet » Mon 18 Dec 2006 4:29 pm

Yay!!!!

We have always been advertised as a group on the RNIB website. This was hard to get to and was somewhere under links but it took me ten minutes knowing it was there and wearing lenses to find us!!!

I contacted the RNIB about a month ago and asked could they please add us and some info on KC to the common eye conditions page, where there are other eye problems. I didn't really think that other people with KC would spend the time looking for links if KC wasn't even listed on the common eye problem page.

I had an email recently saying that they would very nicely update the site and add some info, and sure enough KC is now there!! It is listed with the common eye conditions and there is a direct link to us!!!

YESSSSSSSSS

Christmas came early!!!!!!!!!!!!!! LOL!!!
:lol: :D

Hoping that you can all find us!!! If you go to the main home page at the RNIB and scroll down under the top searches part you will see common eye complaints. If you click on that and scroll down under other eye conditions you will find corneal dystrophies (including KC!!). I have thanked them kindly for changing it for us :lol:

Sweet X x X

RNIB Helping you live with sight loss
Sweet X x X

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jayuk
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Postby jayuk » Mon 18 Dec 2006 4:37 pm

Job worth doing and well done - you!
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
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GarethB
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Postby GarethB » Mon 18 Dec 2006 6:51 pm

If there are any other areas anyone feels we can promote the support group along the lines of what Clair has done, please let us know.

Mr Thornton has been in his local paper and promoted us and there as also been an article in the Time Newspaper about KC which was reprinted in our latest news letter.

Regards

Gareth
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Pat A
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Postby Pat A » Mon 18 Dec 2006 7:19 pm

It's the important bit "including Keratoconus" that's so good! Although I did actually find you via the RNIB website, it was more by luck than judgement as I tried to work out what else it could come under - not everyone would do that I suspect. So well dome!

Also I recently went to a local "resource centre" for people with visual impairment, (only found out about them when they were rattling collectrion tins outsode my local Tesco's!) and they had never heard of Keratoconus! It is however quite a small set up and is a local charity. But I have explained to them what KC is and am talking to them about how we can raise the profile of KC in their centre. I will also ask them to provide a link to this group on their website too. Anything else you think I should be doing?

Pat
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Sweet
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Postby Sweet » Mon 18 Dec 2006 7:34 pm

Hehe Pat i know!!! It took me ages to find us before and then it was only after i contacted them to ask!!!

Thanks Gareth for editing my link, i can never get the hang of that!!!

Sweet X x X
Sweet X x X

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Louise Pembroke
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Postby Louise Pembroke » Mon 18 Dec 2006 8:48 pm

This is great thanks Sweet!
Lx
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]
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John Smith
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Postby John Smith » Mon 18 Dec 2006 9:05 pm

Thanks Pat; the more links to us the better :D
John
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james mckinlay
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Postby james mckinlay » Tue 19 Dec 2006 8:09 pm

a big thank you for your hard work that is awesome news and im sure people will look at it and hopefully use the forum and support groups even if they dont its still a great source of information.

well done

thanks again happy christmas and a great new year

james :!: :P
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BlackA
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Postby BlackA » Wed 20 Dec 2006 6:25 pm

Congratulations!!! :D
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