LITERACY – Training program for people with cystinosis

The LITERACY project is a digital educational program for people with cystinosis and their families. It provides easy-to-understand information about the disease and helps make everyday life safer and easier to manage.

A combination of podcasts, explanatory videos, and interactive Q&A sessions enables both self-directed learning and direct interaction with experts. The program’s content covers a broad spectrum and is based on a comprehensive needs assessment conducted among those affected and their families.

Take part in the content evaluation now 

The educational program is currently being scientifically evaluated. We are looking for participants to test the content and take part in accompanying surveys.

👉 Your participation help us improve the program in a targeted way and make it accessible to all those affected in the long term.

How to participate

1. Baseline survey on your current level of knowledge and expectations before the educational program

2.  Access the training program at your own pace during June and July

• 6 podcasts
• 3 explainer videos
• 3 live Q&A sessions with experts

→ IMPORTANT ⚠️: You will receive access to the materials at the end of the baseline survey. Please make sure to note down the password!

3. Follow-up survey (August): Evaluation of the content and your experiences

4. Final survey (October): Final assessment

All information will, of course, be evaluated anonymously. Your email address will only be used exclusively for sending the follow-up questionnaires.

Contact:

If you have any questions, please contact: kontakt@cystinose-stiftung.de