Hello everyone!

I am reaching out on behalf of Cochrane MS and Rare Disease of the CNS, seeking volunteers to assist in translating a survey from English to German and/or French.

This survey is designed for patients affected by MNGIE (Mitochondrial Neurogastrointestinal Encephalopathy), a rare degenerative disease with an average life expectancy of 37 years. Due to its rarity and clinical complexity, diagnosing MNGIE remains challenging and often leads to misunderstanding or confusion with other conditions like anorexia.

As part of a broader collaboration with MITOCON, this survey contributes to the development of a Core Outcome Set (COS) for individuals undergoing liver transplants for MNGIE.

We are seeking for multiple volunteers!

To join us and to learn more about the project and the task, please contact me via Cochrane Engage or email!

I am looking forward to hearing from you!

Claudia

claudia.desantis16@gmail.com