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
Vincent



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, Aaarahus, Spoerl, Caporossi, etc…

With collaboration:

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


More: http://www.keratocone.eu/site_europe/

5 giorni... Non una risposta?

Eccola:
Penso sia un grande evento: leggendo il programma ci si accorge che le cose stanno finalmente andando sul giusto binario per noi Kconici. Sarebbe interessante poi leggere un estratto dagli interventi se fosse disponibile,
Grazie per il post!
S

Hi Vincent...
sorry for time.. but this are hard days...
I already know about this news....

We have about 67 members that subscribed Association.... but not all are so active (sure you mean).

You have my phone number... but never call me.... (i'm waiting.. )
However.. this weekend we can evaluate conditions and terms..

Thanks Beni and a big "bravissimo" for your impressive work and your so active support group! Lucky keratoconus patients!

You speak english like an italian cow!!! Me... it's worst and a perfect disaster! But it was a real pleasure to calling you last saturday!

Some news about the next congress on keratoconus.

Program in english : http://www.keratocone.eu

Official web site in french (next week in english. Spanish and italian later... ):
http://www.keratocone.eu

And, of course, european web sites:
http://www.keratocone.eu/site_europe/asso_europe.html

Amitiés
Vincent



-------------------------------------------------------------------------------------

Dear colleagues, dear friends,


Though not recent, the keratoconus will be in the ophthalmic limelight on November 30th 2007 during the first European congress on keratoconus. The treatment of this disease – a disease which nowadays remains the first indicated cause for corneal transplantation among young adults – is at the beginning of a major turning point in its evolution. That’s why I am glad to coordinate the organisation of this first congress with Pr Joseph Colin. I am delighted at the collaboration of the CRK with the Association Kératocône to organise a meeting for patients on that day.

I think it is important, first and foremost, to mention that all these advances have been made possible thanks to a better knowledge of the innermost structure of this mysterious dystrophy. With this aim in view, the numerous histological works, particularly Professor Pouliquen’s, have really brought about the “modern” keratoconus era. The advance of para clinical exploration initially, and most importantly of the topography of the cornea, have allowed to make more and more precise detection of its formes frustes, which are real nightmares for the refractive surgeon. More recent technologies (aberrometry, Scheimpflug rotating camera, genetic studies will no doubt cast a new light on this difficult diagnosis to the point of abnormality.

Contactology has also advanced, with lenses increasingly better fitting lenses that can be adapted to the unusual fitting to the unusual curvatures of keratoconus, offering remarkable safety, quality of vision and comfort. It has allowed to postpone still further for as long as possible the surgical operation which is often dreaded by our young patients. However, though still concerning 20% of these patients, the surgical technique of transplantation has considerably evolved too, thanks to the rapid expansion of lamellar transplantations which today allow to keep the patient’s endothelium and thus lessen the risk of rejection as much as possible. Par ailleurs, à défaut d’obtenir pour l’instant un traitement étiologique du kératocône grâce Besides short of obtaining an etiological the treatment of the keratoconus for now thanks to the combined advances of genetic therapy and molecular biology, new preserving strategies are developing, such as corneal collagen cross-linking which could soon become a precious tool in the fight against this dystrophy.

We have finally been eager to devote this first congress to post-LASIK ectasia which is a particular but connected entity, and which won’t fail to (will undoubtedly) interest all those who practise this kind of surgery.
As you can see, the keratoconus is now an ailment which is the target of many new kinds of diagnostic and therapeutic techniques, which create wonderful hope for all our patients. Hoping this meeting will give an overview as comprehensive as possible of this fascinating but nonetheless dreadful disease, I will be seeing you in Toulouse on November 30th!

Pr François MALECAZE - CRK Toulouse

Dear friends,

Post-LASIK corneal ectasias are a severe, but rare, complication of modern refractive surgery. Some risk factors are well defined, such as a corneal topographic asymmetry, a thin cornea <5000µ or a stromal residual bedding < 250µ. The existence of a family keratoconus is also an unfavourable factor. However some cases of ectasias have been observed without any known risk factor, and conversely some patients showing a risk have been treated with LASIK without developing an ectasia. This first European congress will allow to share our respective experiences on keratoconus and post-surgery ectasias.

Pr Joseph COLIN - CRK Bordeaux

Love and thanks to Florence for this translation.

Per chi non avesse ben inteso.... SAB scorso ho ricevuto una telefonata da un tizio in inglese... era il caro V2F !

La telefonata era mirata all'invito ufficiale per il 1° congresso europeo sul cheratocono. che si terrà a Tolosa il 30 NOV 2007

Abbiamo parlato una mezz'oretta e ci siamo raccontati un bel pò di cose.. anche se come ha già chiarito Vincent, con il mio inglese da mucca.. e il suo IDEM... è stata un'impresa.. ma ce l'abbiamo fatta.

Al congresso parteciperanno anche
AMC (Associazione Malati di Cheratocono) - Association Italienne
UK Keratoconus Group - Association britannique
KERATOCONUS AUSTRALIA - Association australienne
Keralens.de - Informations et forums (Germany)
Keratocône.org (Swiss)
Site bulgare - Informations et forums
KCglobal - Informations et forums
India support Group - Informations et forums
Asociación de afectados por queratocono de Castilla-León - Association espagnole
NKCF (National Keratoconus Foundation) (USA)
NLKC (Nederlandse Lotgenoten Keratoconus) - Informations et forums
Xtra-Mini-site de Marie, qui propose un petit forum. Nombreux popup... (Norvegia)
Site Russe d'informations

Chi è interessato.. cominci a preparare la valigia..
Il programma lo potete leggere QUI
Il sito prossimamente verrà proposto anche in italiano.

Bhe dai che bello, se ci va qualcuno io mi aggrego non capirò molto del congresso ma fa niente io vengo per la compagnia poi qualcuno mi spiegherà cosa hanno detto

Anche io! Anche io!



Ann

azz.. mi ritroverò beato tra le donne???

ciao a tutti sono da poco iscritta ma sono una vecchia cheratoconica
questo sito è davvero una gran cosa. vi seguo da tempo ma non mi ero ancora manifestata un po' xché sono assolutamente inesperta di forum e poi xché nei mesi scorsi ho avuto parecchi problemi con le lac e quindi a stare a lungo su computer. la notizia del congresso è molto stimolante e volevo intanto dire qui che se ce ne fosse bisogno sono disponibile (conosco il francese abbastanza bene) per contatti o traduzioni o non so.. per presentarmi invece scelgo un altro topic.. dico bene?

dici benissimo!
certo.. se tu venissi a Tolosa.. un interprete di francese mi servirebbe proprio..

perché no ?se riesco ad organizzarmi (..tengo famiglia)mi piacerebbe molto esserci, mi sembra un appuntamento importante qualunque siano le motivazioni che possano aver contribuito a far emergere finalmente il mondo sommerso dei kconosi...
comunque ribadisco la mia disponibilità se serve fare in francese una telefonata o mail o traduzione. anzi, direi di più e magari con l'entusiasmo del neofita non avendo esperienza delle attività del sito mi allargo troppo e dico anche una stupidaggine: perché non creare un gruppo di lavoro che si occupi del congresso?..o forse ci avete già pensato...
si sa già chi tra i nostri luminari parteciperà?non ho visto nomi italiani nel programma...

Cher Scaistar et chers amis,

I do hope, that we will have the opportunity to meet some of Socio AMC members in Toulouse on 30 November!

This meeting of European specialists of keratoconus is important both for the patients concerned and for the different support groups that represent them. We hope to share how we all cope with KC and find ways to make life easier. Collaboration among support groups in different countries can only be a good thing. As exemple, this sort of collaboration is already taking place – especially with genetic research. I am thrilled that Dr Tuft and Dr Malecaze have recently launched a project for a joint research protocol.

As you can see on http://www.keratocone.eu you will soon be receiving a short list of concerns we have in France. You can add on to it and hopefully, other groups will do likewise. The idea is to use this list as part of a document that will be written in common and presented to the european specialists on 30 November.

As you know, this congress is not open to the general public, which is why we have a limited number of guest passes – ony 4 or 5 per association. If, however, you have more people than that willing to come, I think we can find some extra passes. Can you let us know within the next few days, so that we can get organized? Larry, the president of the australian association will be with us and our UK’s friends will be present, in one form or another, too... If you come the Thursday evening do not forget the “ diner” all together! We can also help you to find an hotel Thursday evening. Just tell us!


For other information, I send to Scaistar by PM the mail of Laure which speak a perfect Italian

Amitiés à tous!
Vincent

Cher Vincent

merci de la gentillesse et de penser toujours même à nous.
peut-être que nous ne sommes pas très bons avec les langues étrangères mais comme tu peux voir dans le forum nous sommes tous grands…....….bavards (is that word correct?! I mean that we chat a lot!!!!)

perhaps better with English… at least if I make a mistake you won't notice it
however I cannot come to Toulose for family and work reasons ...but I hope that Benedetto will find someone to take with him.......

I am really sorry because ‘I know’…….or better I always spy, our common friends of the English and French forums so I would have liked to meet them all and to have a real chat with you…..
Ok that’s enough for my English and French today I hope that some young student from this forum could talk to you now, otherwise you will think that the Italians are not so friendly……I’m going to the seaside for a short holiday , hope to read you soon……SALUT !!!!!

Chère Cinzia,

Merci pour ton message et bravo pour ton introduction en français ! En effet vous êtes de « giga grands bavards » sur associazionecheratocono.it mais c’est pour le plus grand plaisir des visiteurs et des patients ! Surtout ne changez rien ! Dommage que tu ne puisses pas venir à cette rencontre qui sera, à mon avis, bien utile pour nous tous. J’espère très sincèrement que Bennedetto pourra faire le voyage et se déplacer avec quelques amis pour y représenter votre dynamique association!…

This morning, Pr François Malecaze told me that, his friend, Pr Aldo Caporossi will be speaker at Toulouse next november! It’s a good new for you and for us!!!
Concerning Toulouse, do not forget that the access for the congress is completely free for all representatives of associations. So, nothing to pay. That includes : conferences, coffeebreaks, midday-lunch and evening-cocktail.

For the hotel, as specified to Ben, we can book rooms at the following conditions:
Single room, one person = 62 € by night
Double room, two persons = 69 € by night
This prices include breakfast.
If you arrive on Thursday evening, we will organize a dinner to strike up an acquaintance with all association participants and for those who stay on Saturday, we will propose a visit of Toulouse city.

I would be grateful to you if you could give me as soon as possible the number of Italian participants, their name and the number of rooms we have to book for your team.

On the other hand, in order to work together for this Congress, I have set up a “working” forum. This forum will be limited to Commitee members of European associations and others country (Italy, UK, Spain, Germany, France, Australia, etc...). It will allow us to work together more efficiently on the writing of the “White Book” which will be given to our European specialist.

Like you, I am looking forward to seeing you in November. And hope to hear from you soon

Very best wishes and sunny week-end

Ps/ Special kiss to Alessandra! My "official" italian lover

Vincent