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LMBBS congress April 2008 Northampton UK, 26 APR 2008

LMBBS congress April 2008 Northampton UK, 26 APR 2008. LMBBS in non-English speaking countries. Presentation by Francis Lestel, vice-president of French BBS Association. BBS in non-English speaking countries. France Personal history

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LMBBS congress April 2008 Northampton UK, 26 APR 2008

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  1. LMBBS congress April 2008 Northampton UK, 26 APR 2008 LMBBS in non-English speaking countries. Presentation by Francis Lestel, vice-president of French BBS Association

  2. BBS in non-English speaking countries France Personal history My daughter, just turned 15, diagnosed at the age of 12 by tips of ‘external’ nephrologists and ophthalmologists, completed by internet research. Diagnosis finally confirmed by Hélène Dollfus as BBS10. Association and statistics French BBS Association created end of 2003. In 2007, 30 families were members. Yearly meetings are organized : * last one near Cannes in September 2007, * next one in Strasbourg in Oct/Nov 2008. Contacts Main specialists in France conducting BBS studies : - Professor Hélène Dollfus of Strasbourg - Professor Alain Verloes of Paris. - French BBS Association : President = Bertrand Lasbleis <bertrand.lasbleis@wanadoo.fr>, Vice-president = Francis Lestel <francis.lestel@gmail.com>. Website with partial English translation : www.bardet-biedl.com

  3. BBS in non-English speaking countries France (Cont’d) Portanum This is a charity project co-developed by THALES for the software and IBM-France for the hardware. It allows filming the classroom blackboard with a camera, and displaying the result on a PC screen, with features such as zooming, enhancement of contrasts and changing colours. Information and free downloading on www.portanum.com (French/English versions). Top-Braille This is a device developed by a company in Nice, France. It allows quasi real-time reading of ordinary characters (newspapers, stickers,…) and translation into Braille and synthesized voice. Information and sales conditions on www.top-braille.com (French text/English video). Rare diseases forum: The first “rare diseases” forum was held in Nice on 8 November 2007.In France, 6000 to 7000 rare diseases affect in total 3 million people. The “rare diseases alliance” references 174 associations, amongst which BBS.

  4. BBS in non-English speaking countries Germany Association and statistics The German BBS Association is a subgroup within the “Pro Retina Deutschland” association. In 2007, 70 BBS-families were registered, not all being members of Pro Retina Deutschland . Regular meetings are organized. Contacts BBS-Germany Association’s President : Franziska Kellermann <frankell@t-online.de> Doctor conducting study : Hr. Metin CetinerStudienkoordination Bardet-Biedl-SyndromKlinik für Pädiatrische NephrologieUniversitätsklinikum EssenHufelandstr. 5545122 EssenTelefon +49 (02 01) 7 23 33 50Telefax +49 (02 01) 7 23 37 85E-Mail metin.cetiner@uni-essen.de

  5. BBS in non-English speaking countries Belgium PARENT CONTACT GROUP: Marc & Chris Van Liefferinge-Perdieus Kruisstraat 76 3120 Tremelo (Belgium) +32(016)-537120 marc.van.liefferinge@village.uunet.be Other countries We have contacts in Quebec, Italy, Finland, Spain. There are no BBS associations known there. Multinational discussion group LMBBS@yahoogroups.com Parents group in English language. Worldwide, but 2/3 USA. Interchange of tips : medical, behavioural, etc… Internet databases www.orpha.net : 6 languages available www.genetests.com : in English.

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