Is your sleep is impacted by your CMT? Whether it is or not, please complete the Sleep disturbance Short Form 8a survey to inform researchers about the impact of #charcotmarietooth on your sleep. #research #CMT

When was the last time you completed a survey in your CMT&Me app? Every time you complete one you are contributing to vital research. Take a break and do one today. #charcotmarietooth #research #raredisease

DID YOU KNOW? 94% of CMT patients report that fatigue impacts their mental health. Let us know whether your mental health has been impacted due to your CMT by completing the ‘Your CMT’ section of the Medical Profile within the CMT&Me app.

#charcotmarietooth can impact all aspects of life, including your work or studies, from needing to work part-time or remotely due to accessibility issues on-site. Complete the "Work or Studies" section of the medical profile regularly to record any change in your circumstances.

Use the symptom diary to help remind you of key things to talk to your medical team about. #charcotmarietooth #research #raredisease ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

It's #CMTawarenessmonth 2023 in Europe. Reach out to your patient advocacy group to take part in the activities and campaigns they're organising to spread the word about #charcotmarietooth. ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom

DID YOU KNOW? Over two thirds of CMT patients have sleep disorders. About half need medication to help them sleep. Does CMT affect your sleep? Let us know by completing the ‘Sleep Disturbance – Short Form 8a’ survey within the Surveys section of the CMT&Me app.

5 years ago, the CMT&Me study was launched in the US with the support of @HereditaryNeuropathyFoundation and CMT Association. More than 1,300 people in the US are participating in the study and sharing valuable information on a regular basis. Thank you to all our participants!

The Pain intensity - scale survey in the app has just 4 questions. When pain strikes, complete this short survey so your pain doesn't go unrecorded. #charcotmarietooth #CMT ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

The optimal frequency for completing many of the surveys is at least once a month. Have you done any yet this month? Why not complete one or two today? #CMTawarenessmonth ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

The medical profile in your CMT&Me app is a central place to log information about your #CMT. You can update your treatments, medicines and walking aids/orthoses. This is a great tool to use when talking to medical professionals about your condition.

The latest CMT&Me newsletter went out by email earlier this month to all participants. Check you inbox or the 'knowledge' section of the app to catch up. #newsletter #cmt&me ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

What have you done to mark #CMTAwarness month? Completing a survey is a good way to reflect on how you're doing. Why not sit down and complete the QuickDASH Outcome Measure & rate your ability to do activities. This helps the CMT&Me study understand living with CMT is like.

The daylight hours are getting shorter and winter is approaching. Is that a good or bad thing for the impact of your CMT on your sleep? Complete the Sleep disturbance - short form 8a survey to monitor your sleep. #charcotmarietooth #sleep #raredisease

Quality of life is measured by the EQ-5D-5L survey. Why not take 3 minutes to fill it out and slide the scale to inform how you are feeling overall. #charcotmarietooth ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

DID YOU KNOW? Fatigue affects intimate relationships of half CMT patients. Share your experience of fatigue with us by completing the ‘Brief Fatigue Inventory’ survey within the CMT&Me app. ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

Are the notifications in your CMT&MeApp turned on? Never miss a survey again by activating them in your Settings -> CMT&Me -> Allow Notifications ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

How often does #pain interfere with your plans? From enjoyment to concentration or socializing, complete the "Pain interference" survey. By completing this survey once a month, it's a good way for you to reflect on what has been happening with your #CMT. #charcotmarietooth

Don't forget all data nuggets are available in the knowledge section of the app. Allowing you to see research and results from the research you continue to contribute to. #charcotmarietooth ECMTF CMT-France Federación ASEM ACMT-Rete CMT United Kingdom HereditaryNeuropathy Charcot-Marie-Tooth Association

Did you see our webinar earlier this year about the impact of fatigue? You can watch it and all other webinars and videos on our CMT&Me YouTube playlist bit.ly/3LL81qf