Activities

Update Newborn screening 2020
April 2020

Background: The objective of the project was to create a methodological basis for expanding the existing newborn screening by a […]

Update SAVE
October 2019

Form for documentation of the eye examination is now online!

Update Newborn screening
May 2019

Almost 200,000 newborns, of whom cystinosis was found in one child, have so far been examined within the framework of […]

Update SAVE
May 2019

The Cystinosis Foundation Germany and other partners initiated a telemedical concept

Cystinosis educational event
February 2018

On June 9, 2018 the foundation carried out advanced training in cystinosis for nephrologists and ophthalmologists in Frankfurt / Main, […]

Sternstunden-Gala 2017
December 2017

On Friday, December 15th, 2017, PD Dr. Katharina Hohenfellner and Alexander Huber are guests on Bavarian television at the „Sternstunden […]

Newborn screening
December 2017

It is planned to develop the scientific basis for newborn screening for cystinosis.

Bone meeting
December 2016

The impact of the disease on the bones and the therapy are still unclear, which is why an international

Cystinosis summer camp 2016
July 2016

In 2016, the cystinosis holiday leisure again took place at the Björn Schulz Foundation’s Irmgardhof on Lake Chiemsee, Germany.

Eye meeting
October 2015

Infantile nephropathic cystinosis is a multi-organ disease.

Cystinosis summer camp 2015
August 2015

Fifteen children between the ages of 7 and 16 took part in the holiday leisure in 2015.