Author Archives: Denise

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 member and ultimately Professor of Pediatrics at UCSD School of Medicine from 1970-2011.  Dr Schneider’s work lead to the development of cysteamine treatment which is used by many of our community.

We offer our sincere condolences to the family, friends and colleagues of Dr Schneider.

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 details on the attached flyer and we will post more information here as it is confirmed.

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 Jean’s family and to the wider cystinosis community for their loss.  Rest in Peace.