{"id":2051,"date":"2022-08-18T11:14:02","date_gmt":"2022-08-18T09:14:02","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=events&#038;p=2051"},"modified":"2022-08-18T11:14:03","modified_gmt":"2022-08-18T09:14:03","slug":"international-meeting-on-rubinstein-taybi-syndrome","status":"publish","type":"events","link":"https:\/\/ern-ithaca.eu\/es\/events-news\/upcoming-events\/international-meeting-on-rubinstein-taybi-syndrome\/","title":{"rendered":"International meeting on Rubinstein-Taybi Syndrome"},"content":{"rendered":"<p class=\"wp-block-paragraph\">In 2021 an international consortium on Rubinstein-Taybi Syndrome (RTS)&nbsp;<strong>started to write a best practice clinical guideline<\/strong>&nbsp;supported by the ERN-ITHACA.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The group had their first online meeting in January 2021 and&nbsp;<strong>the guideline is nearing its completion<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Through an event organised by ER-ITHACA and the local support of Haukeland University, the RTS consortium is going to meet face-to-face in order&nbsp;<strong>to discuss the guideline recommendations and to strengthen the collaboration<\/strong>&nbsp;around the syndrome.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The meeting will be restricted to members of the RTS consortium, but if you are a patient representative with special interest in RTS, please feel free to contact us to express your interest on the meeting.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Program:<\/p>\n\n\n\n<figure class=\"wp-block-table\"><table><tbody><tr><td><strong>DAY 1<\/strong><\/td><td><strong>SEPTEMBER 29, 2022<\/strong><\/td><\/tr><tr><td>13:00<\/td><td><strong>Welcome<\/strong><br><em>Didier Lacombe, France<\/em><\/td><\/tr><tr><td>13:10<\/td><td><strong>Short historical introduction<\/strong><br><em>Raoul Hennekam, Netherlands<\/em><\/td><\/tr><tr><td>13:30<\/td><td><strong>Outline of the meeting<\/strong><br><em>Didier Lacombe, France<\/em><\/td><\/tr><tr><td>13:40<\/td><td><strong>Ch 1 Introduction<\/strong><br><em>Didier Lacombe, France<\/em><\/td><\/tr><tr><td>13:45<\/td><td><strong>Ch2 Clinical diagnostic criteria<\/strong><br><em>Sofia Douzgou, Norway<\/em><\/td><\/tr><tr><td>14:45<\/td><td><strong>Ch3 Molecular diagnostic criteria<\/strong><br><em>Julien van Gils, France<\/em><\/td><\/tr><tr><td>16:15<\/td><td><strong>Ch4 Neonatal care<\/strong><br><em>Lloyd Tooke, South Africa (online)<\/em><\/td><\/tr><tr><td>16:45<\/td><td><strong>Ch5 Endocrinology &nbsp;<\/strong><br><em>Leonie Menke, Netherlands<\/em><\/td><\/tr><tr><td>17:15<\/td><td><strong>Ch6 Gastroenterology<\/strong><br><em>Sixto Garcia-Minaur, Spain<\/em><\/td><\/tr><tr><td>17:45<\/td><td><strong>Ch7 Heart and lungs<\/strong><br><em>Donatella Milani, Italy (online)<\/em><\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<figure class=\"wp-block-table\"><table><tbody><tr><td><strong>DAY 2<\/strong><\/td><td><strong>SEPTEMBER 30, 2022<\/strong><\/td><\/tr><tr><td>09:00<\/td><td><strong>Ch8 Eyes<\/strong><br><em>Maria Van Genderen, Netherlands (online)<\/em><\/td><\/tr><tr><td>09:30<\/td><td><strong>Ch9 ENT<\/strong><br><em>Edward Cooper, USA<\/em><\/td><\/tr><tr><td>10:00<\/td><td><strong>Ch10 Dermatology<\/strong><br><em>Cecilie Bredrup, Norway<\/em><\/td><\/tr><tr><td>10:45<\/td><td><strong>Ch11 Urogenital system<\/strong><br><em>Leonie Menke, Netherlands<\/em><\/td><\/tr><tr><td>11:15<\/td><td><strong>Ch12 Musculoskeletal system<\/strong><br><em>Cathy Stevens, USA<\/em><\/td><\/tr><tr><td>11:45<\/td><td><strong>Ch13 Intra-oral<\/strong><br><em>Agnes Bloch-Zupan, France (online)<\/em><\/td><\/tr><tr><td>13:30<\/td><td><strong>Ch14 Immunology<\/strong><br><em>Francesco Saettini, Italy (online)<\/em><\/td><\/tr><tr><td>14:00<\/td><td><strong>Ch15 Neurology<\/strong><br><em>Hulya Kayserili, Turkey<\/em><\/td><\/tr><tr><td>14:30<\/td><td><strong>Ch16 Development<\/strong><br><em>Lidia Larizza, Italy (online)<\/em><\/td><\/tr><tr><td>15:45<\/td><td><strong>Ch17 Behaviour<\/strong><br><em>Jane Waite, UK (online)<\/em><\/td><\/tr><tr><td>16:45<\/td><td><strong>Ch18 Adult care<\/strong><br><em>Sofia Douzgou, Norway<\/em><\/td><\/tr><tr><td>17:00<\/td><td><strong>Ch19 Clinical trials<\/strong><br><em>Didier Lacombe, France<\/em><\/td><\/tr><tr><td>17:15<\/td><td><strong>Voting for all recommendations<\/strong><br><em>Including as many online participants as possible<\/em><\/td><\/tr><tr><td>17:45<\/td><td><strong>Final remarks and implementation of the guideline<\/strong><br><em>Didier Lacombe and Raoul Hennekam<\/em><\/td><\/tr><\/tbody><\/table><\/figure>","protected":false},"featured_media":0,"template":"","categories":[],"tags":[],"class_list":["post-2051","events","type-events","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - 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