Cystinose Stiftung

Founded in 2015, Cystinose Stiftung is a charity based in München, Germany working on health, medical research, science & research +1 more.

The Cystinose Stiftung is a legally capable civil-law foundation based in Munich, Germany, founded in 2015 to support children, adolescents and adults with cystinosis, a very rare inherited metabolic disease that stores cystine in cells and affects multiple organs, mainly the kidneys and eyes. Its stated aims are direct everyday help for patients and families, improving clinical care, and funding research projects that influence the course of the disease. The foundation runs projects including a digital training programme (LITERACY), a case-file project (SAVE), an evidence-based S3 clinical guideline (SELECT S3), quality-of-life questionnaire development (QUALIFY), a muscle-training study (IMPACT), and a model project for genetic screening alongside newborn screening. It supports an interdisciplinary cystinosis consultation hour for children and adults, which it says is unique in Germany and is based in Bavaria. It also organises webinars, patient recreation trips and educational events, and maintains a patient advisory board and patient care contact. Its purposes are stated as charitable: science and research, public health, education and vocational training, and benevolent aims. Funding comes from private donations and project grants.