Satellite conference
of the 8th Symposium of the International Ocular Inflammation Society
May 21st 2005, Granada, Spain
The representatives of European uveitis patient interest groups have met during a satellite conference of the 8th Symposium of the International Ocular Inflammation Society on May 21st 2005, at the Hotel Condor, Granada, Spain. This meeting comes after the Mestre conference which took place in Italy in 2004.
The participants were (click here to mail all participants):
| Ophthalmologists | |||
 |
Pr Bahram Bodaghi, MD bahram.bodaghi@psl.ap-hop-paris.fr |
Service d'ophtalmologie | CHU Pitié-Salpétrière 91-105 boulevard de l'Hôpital 75013 Paris France |
 |
Dr Christoph Deuter, MD christoph.deuter@med.uni-tuebingen.de |
Department of Ophthalmology | University of Tübingen Schleichstr. 12 72076 Tübingen Germany |
 |
Pr Phuc Le Hoang, MD phuc.lehoang@psl.ap-hop-paris.fr |
Service d'ophtalmologie | CHU Pitié-Salpétrière 91-105 boulevard de l'Hôpital 75013 Paris France |
 |
Dr Moz Oziazgan, MD ozyazgan@isbank.med.tr |
Department of Ophthalmology | ? Turkey |
|
Dr Margarete Stoellinger, MD m.stoellinger@salk.at |
Department of Ophthalmology | University of Salzburg Austria |
 |
Pr Nicole Stuebiger, MD nicole.stuebiger@med.uni-tuebingen.de |
Department of Ophthalmology | University of Tübingen Schleichstr. 12 72076 Tübingen Germany |
|
Dr Ilknur Tugal-Tutkun, MD itutkun@istambul.edu.tr |
Department of Ophthalmology | Istambul University Turkey |
 |
Pr Manfred Zierhut, MD manfred.zierhut@med.uni-tuebingen.de |
Department of Ophthalmology | University of Tübingen Schleichstr. 12 72076 Tübingen Germany |
| Patient interest groups representatives | |||
 |
Mrs Claude Andrieux claude.andrieux@libertysurf.fr |
Inflam'oeil www.inflamoeil.org |
Inflam'oeil 13, rue Dubrunfaut 75012 Paris France |
 |
Mr Phil Hibbert info@uveitis.net |
Uveitis Information Group (UIG) www.uveitis.net |
South House Sweening Vidlin, Shetland Isles ZE2 9QE UK |
 |
Mr Matthias Nahm matthias.nahm@web.de |
Deutschen Uveitis Arbeitsgemeinschaft (DUAG) www.duag.org |
Hellmundstr. 3 65183 Wiesbaden Germany |
 |
Mr Milard Larady No email |
www.duag.org | 29 York Mansions Prince of Whales Dr. London SW11 4DL UK |
 |
Mrs Larady No email |
www.duag.org | 29 York Mansions Prince of Whales Dr. London SW11 4DL UK |
 |
Mr Lancelot Pecquet lancelot@pecquet.org |
Inflam'oeil www.inflamoeil.org |
Inflam'oeil 13, rue Dubrunfaut 75012 Paris France |
| Sponsors | |||
 |
Dr Ana Bassols Medical advisor ana.bassols@bausch.com |
Bausch & Lomb http://www.bausch.org |
Bausch & Lomb 416 rue Samuel Morse le Millénaire CS 79005 34967 Montpellier CEDEX 2 France |
The agenda is the following:
The meeting starts at 2pm. Pr Manfred Zierhut presents the EUPIA project.
Direct help to patients is amongst national groups' primary goals since these groups have local correspondents. For that reason, EUPIA shall focus on goals that can't be easily achieved at national level. At the moment, several of such goals have been identified:
Pr. Bodaghi suggests to clear up the role of national journals and websites vs EUPIA's
Attendees are invited to suggest other goals by email.
Pr. Zierhut shows a German preliminary version of the first issue of its journal Uveitis.
The German edition will be 64 pages whereas English and French editions will only be 48 pages. The difference is due to the number of ads.
Pr. Zierhut suggests the second issue should be about uveitis associated to toxoplasmosis which would bring interesting information to ophthalmologists of poorer countries in which this disease is frequent. This topic could also be of interest in connection with the 2006 Brazil World Congress of Ophthalmology.
Although only few European patients suffer from these type of uveitis (less than 10% in UK, according to Mr. Hibbert), people agree this would be an interesting subject because, even un Europe Toxoplasmosis Uveitis is the most common etiology of posterior uveitis.
The question of the copyrights of the content of Uveitis remains to be clarified. Pr. Zierhut suggests that EUPIA names an editor for each language who will have the copyright.
Everybody agrees that the website should have two parts: public and private. The private part should require an authentication protocol that would ensure the visitor is member of a national group. The visitor can then choose his favourite language and browse the private part. Pr. Bodaghi, proposes to send suggestions based on his experience of pediatric rheumatology website in different languages.
The public part of the site would feature general information about uveitis (types, drugs), logos of national group members, scientific organizations (IOIS, IUSG) and sponsors (Bausch & Lomb...) together with the corresponding hyperlinks.
The private part would feature:
The question of having a list of specialist of uveitis is discussed. Pr. Zierhut reminds the solution described in Mestre last year: sending a questionnaire to all universities and larger clinics and putting a summary of the results on the website. The questions would be, for instance:
Pr. Zierhut will send the actual questionnaire to representatives of each group.
Pr. Zierhut suggests to transform "German Uveitis awards" into "EUPIA Uveitis awards".
Pr Zierhut expects 10 new groups in the next 5 years.
Mr Phil Hibbert suggests that EUPIA should help the creation of new national groups by giving a template on EUPIA's website. For instance, there could be guidelines on:
Bringing together hundreds or even thousands of patients would give EUPIA the strength to promote patients' interests. For instance, EUPIA could:
EUPIA shall be a federation of national groups, one per country. Each group shall be called a member. EUPIA shall be organized by a committee formed by representatives of each member group.
Pr. Zierhut suggests that each group chooses:
The way these representatives are named or elected shall be the responsibility of each member group.
Every two years, this committee shall elect a board, consisting in:
The French and English groups express some reluctance about MDs getting involved into the heading of EUPIA. Pr. Bodaghi describes the solution found in France: the heading committee consists only of patient representatives whereas MDs form a scientific council, which has its own president. This council has recently organized a national epidemiological study about uveitis.
Pr. Zierhut argues that for keeping better contact with industry, professional ophthalmologists should be part of the committee.
At the moment, the situation of potential European group members is the following:
Mr. Milard Laradly suggests a congress in Scandinavia to boost the creation of national groups and their membership to EUPIA. Pr. Zierhut acknowledge that the idea is good but doesn't seem to by of too high priority so far.
If there is no national group, patients can join existing group of other countries, according to their language preferences, for instance.
Pr. Zierhut adds that some non-European countries (Brazil, India, Israel and Japan) wish join EUPIA which could become UPIA (Uveitis Patient Interests Association - which sounds the same as EUPIA) at some point. This opening project shall take into account the possible loss of European funding.
Meanwhile remains the issue of granting/or not the authorization to translate and distribute the information written in Uveitis. Pr. Bodaghi suggests to restrict to "patient educational purpose only". This relates to the copyright status of the articles.
Mr Matthias Nahm has met a specialized lawyer about the legal aspects of founding a European association. Actually, there is no European law about associations (a project was discussed in December 1991 but without result so far). Consequently, EUPIA will depend on the national law of the country in which its statutes will be registered. This also concerns the bank account of EUPIA. For instance, the European Association for Research on Accidents registered its statutes in Germany.
Mr. Milardlardly suggests as it is European, it should be in Brussels. Pr. Bodaghi fears that it would be difficult since there is no Belgian group so far.
A discussion will take place during the following months to find the country that grants best conditions, in particular as tax-deduction of donations is concerned.
The question of how the board can rule EUPIA from their own country shall also be clarified. This issue is particularly crucial as far as the bank account is concerned. A solution could be the following: the national group of the Treasurer's nationality opens a second bank account in euros labeled "EUPIA" in which all EUPIA's money is transferred. These transfers should happen at most every two years, when the Committee is elected.
At the moment, Uveitis is funded by industry and French and English editions had only two ads in the first issue. (Dr Anna Bassols reminds prescription drugs ads are forbidden in France).
Pr Bahram Bodaghi wonders how one could count on the 20 M¤ fund of the European Vision Institute (EVI).
Pr Zierhut suggests EUPIA shall have an emergency budget (500 ¤ from each society). This shall insure the journal can be released even if the companies don't sponsor enough advertisements, for some reason.
Sponsors could finance the yearly meeting of EUPIA committee (one of the reasons the Dutch group couldn't participate this time is because they don't have enough money). Pr Bodaghi emphasizes this mostly would concern patient representatives since physicians have their own fundings anyway.
Each national group shall contribute yearly to EUPIA by paying 1 ¤ for each member it has at a national level (possibly above a critical mass that should be discussed - NB: at the moment, membership is 20 ¤ in Germany, £10 in UK - 50% of people donate 10 ¤ or more - and 42 ¤ in France). This should bring about 200¤/year/group to EUPIA.
Pr. Zierhut recalls his idea of a partnership between the German magazine Art and EUPIA to publish a catalogue of art designed by young artists that would be sold with a 50% profit for EUPIA. Mr. Hibbert underlines the symbolic link between vision and painting.
No new project is suggested.
The question about the next meeting will be discussed by email (October in Portugal?).
The meeting ends at 6pm.
