The objective


European Cystinosis Conference 2018


Learn interesting facts about the disease cystinosis – in children, adolescents and adults.  

Meet families who are experiencing the same as you – and who understand you without long explanations!


More and more adults with cystinosis live life to the fullest. Their disease does not limit them too much. They are independent and they don’t have difficulties every day to get up and enjoy life.
However, there are also more and more people whose life is strongly restricted due to cystinosis and who have great medical problems. They find it difficult, and some days impossible, to master everyday life, to finance their aids and medicines – and to keep and maintain social contacts at the same time.


Until now, there has never been a conference focussing on “adult life” with cystinosis. Thus far, research has (rightly) been more concerned about children and adolescents with cystinosis – in the hope that someday, these children reach adulthood with certainty. This is where we are today:  


People with cystinosis are growing up – but cystinosis is omnipresent!


It is time, to turn our attention to the many medical, pharmacological as well as psychological and social issues that need to be solved regarding cystinosis in young and older adults.
This conference provides the opportunity to learn what has already been known for some time and what has recently been discovered.
However, today provides above all the opportunity to ask the right experts the right questions.  


Patients are well aware of their problems. – They expect solutions!
Therefore, in 2018 we invite the whole world of cystinosis to the
European Cystinosis Conference 2018.
We need this exchange now. Many of us are unable to wait much longer!!

Without funding and donations this conference could never take place.
We would like to thank all our donors.