The Cystinosis Foundation Germany was founded in 2015 to support children, adolescents and adults suffering from cystinosis.

People with cystinosis have few advocates so far. Our motivation is to give them a voice.

SAVE: Form for documentation of the eye examination


Update Newborn screening


Update Projekt SAVE


Cystinosis educational event


Newborn screening




„The specialized range of care in the interdisciplinary consultation hour for children and adults is unique in Germany – Bavaria relies on this competence center.“

Melanie Huml
Bavarian Minister of Health, advocate and supporter
of the Cystinosis Foundation Germany

For me personally, the commitment to the Cystinosis Foundation Germany is very important. As an athlete, I try to support the affected children with my experiences.

Alexander Huber
Professional mountaineer

Pioneer work for people with rare diseases and disabilities is essential in a modern society and meaningful for my life.

Alois Glück
Politician and former member
of the state parliament
and President of the
Bavarian State Parliament