Category Archives: Allgemein

Dr Jerry Schneider – RIP

Cystinosis Network Europe was deeply saddened to hear of the recent passing of Dr Jerry Schneider.  Dr Schneider was a pioneer and friend to the cystinosis community, having dedicated his career to the identification and understanding of this ultra-rare disease.  He started his career in the National Institutes of Health (US), and was a founding… Read More »

CNE International Conference 2022 – Save the Date!

Save the date Leuven CNE ICC 2022 We are delighted to announce that the 2022 CNE International Conference will be held in Leuven, Belgium on 7-10 July. We look forward to our friends and colleagues joining us for the scientific meeting on 7 July and the family conference from 8-10 July.  You can find more… Read More »

Jean Hotz – Rest in Peace

It is with great sadness that we heard of the death of Jean Hotz.  Jean was the founder of Cystinosis Foundation USA and was involved in organising conferences in the US and Europe for many years.  She provided much support to countless families and forged connections all over the world.  We send our condolences to… Read More »

Meeting new challenges!

Welcome to this website of a new partner in the “world of cystinosis”. Founded in May 2016 by cystinosis groups from eight European countries we promise to work fast, so you will see here some more information soon. Curious? You can download our flyer here for a first information. Please use our address to contact… Read More »