Top Tweets for #ETSCC
Último día de Conferencia con info de terapia genica en USA por Gavin Cocoran de Axovant y en Europa por Prof Tim Cox de Cambridge.Estamos ante un cambio de paradigma en la búsqueda de una cura para estas #enfermedadesraras, seguiremos trabajando para que sea una realidad!
#ETSCC
Prof. Andreas Hahn presenting current epilepsy treatment options in children with lysosomal disorders at the 7th European meeting of #ETSCC #Seltene #Erkrankungen #Gießen #ZSEGI #UKGM #Kinderklinik #Neuropädiatrie #TaySachs #Sandhoff
El turno de ACTAYS en la Conferencia, con una interesante exposición de nuestro equipo de Sevilla sobre los logros alcanzados en más de 3 años y la intervención de nuestra fundadora sobre los desafíos que nos esperan en el corto plazo #ETSCC
Arrancamos! Llegó nuestra VII Conferencia Europea, un nuevo récord de convocatoria de familias y especialistas de Tay-Sachs y Sandhoff, con los que pasaremos todo el fin de semana en Alemania #EnfermedadesRaras #taysachs #ETSCC
The last talk of the day is by Beatriz Fernández from ACTAYS and Daniel from The CATS Foundation to talk about “searching for a cure: the role of the charities”! # taysachs #sandhoff #etscc #etscc2016 @leLysosome @ACTAYS @Tay_Sachs @Hand_in_Hand_De
Dr Tatiana Bremova from Ludwig-Maximilian University of Munich is our next speaker who is talking about “tanganil - results obtained from acetyl-d-leucine”! #tay-Sachs #sandhoff #etscc #etscc2018 @leLysosome @ACTAYS @Hand_in_Hand_De @Hand_in_Hand_De
Our next speaker is Dr Mario Cordero from the University of Granada to talk about “research for an orphan drug”! #taysachs #sandhoff #charity #etscc #etscc2018 @Tay_Sachs @Hand_in_Hand_De @ACTAYS @leLysosome
Our next speaker for our science and research day is Begoña Cachón-González from the University of Cambridge to talk about setting up a clinical trial for Tay-Sachs and Sandhoff! #taysachs #sandhoff #etscc #etscc2018
Day 2 of the 6th European Tay-Sachs and Sandhoff Family Conference has started! We have Professor Cox from The University of Cambridge giving us an update on their research and potential trial for Tay-Sachs and Sandhoff. #taysachs #sandhoff #etscc #etscc2018
Our final speaker of the day is Dr Belen Tarrat from the Menudos Corazones Foundation to talk about “from diagnosis to the end”. #taysachs #sandhoff #etscc #etscc2018 @Tay_Sachs @ACTAYS @leLysosome @Hand_in_Hand_De @MenudosMenudos
Dr Garcia Velasco from ICI Centre of Madrid is the first speaker of our afternoon session to talk about “family planning methods” for parents who have children affected by Tay-Sachs of Sandhoff. #taysachs #sandhoff #etscc #etscc2018 @leLysosome @ACTAYS @Hand_in_Hand_De @Tay_Sachs
A great morning session is coming to a close at the 6th European Tay-Sachs and Sandhoff Family Conference - we’re now taking questions from our families about what was discussed! #taysachs #sandhoff #charity #etscc #etscc2018 @leLysosome @ACTAYS @Hand_in_Hand_De @Tay_Sachs
First talk is by Dr Carolina del Rincon from Hospital Nino Jesus and it’s all about “receiving a diagnosis: a challenging time”! #etscc #etscc2018 #taysachs #sandhoff @ACTAYS @Hand_in_Hand_De @leLysosome
Daniel has just given the opening address to the 6th European Tay-Sachs and Sandhoff Family Conference attendees in Madrid! Over 100 people are joining us this weekend! #taysachs #sandhoff #charity #comference #etscc #etscc2018
Nos vamos para asistir a la 6♡conferencia europea de Taysachs & Sandhoff que empieza mañana en Madrid . #Daunpasoconrodrigo #EERR ÚNETE a nuestra lucha #RareDisease #enfermedadesraras #Etscc2018 #Etscc #RaroSeriaRendirse @AlejandroSanz #LoQueFuiEsLoQueSoy
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