Charcot Marie Tooth Disease

When pushing for improvements in services and health care delivery, it is important to be able to provide evidence for why changes need to be made. In the area of Charcot-Marie-Tooth Disease it is difficult to make these arguments, as there is little information about who and how people are affected by this condition.

The study aims to find out how many living adults and children in Auckland have been diagnosed with Charcot-Marie-Tooth Disease and the impact the condition has on them. The study will also look into previously hidden financial costs to families and gaps in current services. The findings will be used to identify how services can be improved to assist people living with these conditions.

We are interested in hearing from anyone who has been diagnosed with Charcot-Marie-Tooth Disease who is currently living in Auckland. Every story is important to us. It is just as important for us to hear from people who are only mildly affected by their condition (if at all) as well as people who are more severely affected.

Please click here to read more information about the study, or contact the team on Freephone: 0800 637738.

Summary of findings September 2017

This study is being funded by the Neuromuscular Research Foundation Trust and the Richdale Charitable Trust