LITERACY – Training program for people with cystinosis
The LITERACY project is a digital educational program for people with cystinosis and their families. It provides clearly prepared information about the disease and helps make everyday life safer and easier to manage.
A combination of podcasts, explainer videos, and interactive Q&A sessions enables both independent learning and direct exchange with experts. The program content covers a wide range of topics and is based on a comprehensive needs assessment conducted among affected individuals and their families.
Participate in the Evaluation of the Program Content
The educational program is currently being scientifically evaluated. We are looking for participants who would like to try out the content and take part in accompanying surveys.
👉 Your participation will help improve the program in a targeted way and make it accessible to all affected individuals in the long term.
How Participation Works
1. Baseline survey on your current level of knowledge and expectations before starting the educational program
2. Use the educational program flexibly and 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 (beginning of August): Evaluation of the content and your experiences
4. Final survey (end of October): Final assessment
All information will, of course, be analyzed anonymously. Your email address will only be used for sending the follow-up questionnaires.
[Go to the Survey]
→ Start participation and receive access to the content
[Go to the Content (password protected)]
→ Already received your password after the first survey? Click here to access the content.
Contact:
If you have any questions, please feel free to contact us at: kontakt@cystinose-stiftung.de
