UK Keratoconus Self-Help and Support Association

Dear friends,

In the framework of setting up the first european keratoconus congres which will take place at Toulouse next november 30, we get in touch with european association and would like to know how many members your association was composed of in 2006.
If you have one, the names of your scientific members.

Thanks in advance
Anne



Here is the tentative program:

- Keratoconus Pathogenesis (the researchers in Toulouse have localized
the chromosome and are working to find out which gene causes KC. They
will undoubtedly present their research.)

- Epidemiology of Keratoconus and ectasias

- Detecting post-operative ectasia

- Detecting forme fruste keratoconus. Should I operate or not?

- PRK or LASIK?

- New surgical alternatives in 2007

- New therapies (implants, intracorneal rings, cross-linking…)

- What type of keratoplasty for 2007?

- Presentation of main concerns by KC european patients about keratoconus disease (taking over, money, treatments, work, ...)

Medical speakers (to date):

Pouliquen, Malecaze, Colin, Muraine, Delbosc, Cochener, Hoang-Xuan, Borderie, Laroche, Legeais, Renard, Gautier, Assouline, Pietrini, Lebuisson, Tuft, Ehlers, Guell, Seiler, Van rij, Muller, linda, Duran de la Colina, etc…

With collaboration:

Eurordis, Orphanet, CRK (Centre de Référence du Kératocône), Association Kératocône


Soon translated in english!
http://www.keratocone.eu

This has got to be one of the best developments ive seen in the EU for Keratoconus.....as it seems to cover Patient and Treatment Options.....excellent stuff!

Will this be invite only? Ticket based? etc?

this really looks like a great initiative: well done to all involved.

And the meeting is on St Andrews Day! Can life get any better?

Andrew

Hi Anne,

In 2006, we increased from 900 to about 1100 members - mostly patients. Currently, we have about 1250; although much of the increase are optometrists.

The conference certainly looks to be really good - I hope it goes well.

I think we already have plans to discuss this at the next commitee meeting.

Can patients go?

Reading through the site, my impression is that it is by invitation only and for representatives of each of the 'KC groups' in Europe

Vic

That's how I read it too. maybe sometime in the future there will be a Europe wide conference for people with Keratoconus; but in the meantime it is good to know that service providers are getting together to share best practice.

Andrew

jayuk wrote:Will this be invite only? Ticket based? etc?

It's all a bit loosey-goosey for the time being but it will become clearer in the next few months as we find out how many countries are involved. We are contacting both well-structured associations (like yours) and also forum moderators in countries where there is no formal support group set up.

If you could send over 2, 3 or 5 representatives, that would be great!

So basically, yes, it's by invitation, but I don't think tickets will be issued.

Bruce (Association kératocône)

John Smith wrote:In 2006, we increased from 900 to about 1100 members - mostly patients. Currently, we have about 1250; although much of the increase are optometrists.

Impressive! In our group there are only some 400 paid-up members and 870 on the discussion forum.

Have you got a formal scientific committee composed of well-known British authorities on KC?