@ecmtf

We are a voluntary non-profit federation, formed by European national organizations supporting people affected by Charcot-Marie-Tooth disease (CMT)

 Bruxelles, Belgium
ecmtf.org
Joined July 2017
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  • Following12
  • Followers207
88Media
Read this 2022 Top Accessed article for FREE in JPNS: onlinelibrary.wiley.com/doi/… Want to see more? Join the PNS today! #BestofJPNS #openaccess
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CMTA is relentlessly striving to discover a cure for CMT. 👏 CMTA is pursuing treatments and a cure for all types of CMT with great determination. ✨We invite you to support our mission by becoming a Partner in Research. Learn more here: cmtausa.org/our-research/for…
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Do you feel like your sleep is impacted by your #CMT? Whether it is or not, please complete the Sleep disturbance Short Form 8a survey to inform researchers. @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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The Lower Extremity Functional scale asks about the difficulty you encounter in achieving the simplest of tasks such as getting out of a car. Complete it today. @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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Cramps are a regular occurrence for people living with #charcotmarietooth. When cramps occur, ensure to record them so their frequency and intensity are known. It only takes 1 minute. @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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Completing a survey is a good way to reflect on how you're doing. Why not sit down with a cuppa, complete the QuickDASH Outcome Measure for 7 mn & rate your ability to do activities @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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Help us make the scientific community aware that fatigue is one of the symptoms impacting the life of a patient with CMT. Complete the Brief Fatigue Inventory @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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Thank you @BBCWalesNews for shining a light on CMT (Charcot Marie Tooth) #cmtawarenessmonth
BBC Wales News
@BBCWalesNews30 Oct 2022
Becky's condition means she faces some tough decisions if she chooses to have a child bbc.in/3Dl9jU3
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As part of our #CMTAwarenessMonth posts, we continue to delve behind the scenes at CMTUK, meeting Chris, our Admin Assistant. We asked Chris questions so that you can get to know more about Chris and her role at CMTUK… 👉 bit.ly/3VmCrm7 #charcotmarietooth #cmt
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CMTUK is a charity that provides information and support to the CMT community. We asked our members what their membership means to them... Find out about becoming a member: cmt.org.uk/cmtuk-membership-… #Togetherwerestronger #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware
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Did you know that this October is #CMTawarenessmonth? Find out all about Charcot-Marie-Tooth by checking out the latest article by @CMTUnitedKdom. A vote for CMTUK can help people all over the UK living with the disease. #charitytuesday cmt.org.uk/we-need-your-help…
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If your medical team is changing or moving, log into your #CMTandMeApp and enter the new details. Watch here to see how! #charcotmarietooth #medicalteam @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa bit.ly/3RxmHtO
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Through #CMTAwarenessMonth 2022 in Europe, we want to highlight the symptoms of #charcotmarietooth disease and how to better help those affected by it. To learn more, please follow the European CMT Federation @ecmtf and visit: ecmtf.org/ #CMTawareness
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There are over 3️⃣ 0️⃣ 0️⃣ million people all around the world 🌎 who are living with a rare disease. Rare Disease Day raises awareness for those living with rare disease, as well as their families and carers. 👉 Find out more: cutt.ly/7D7IcJY
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Did you know? 43% of participants in the CMT&Me study are reporting that they use insoles. Download the CMT&Me app today and complete the ‘Treatments’ section of the Medical Profile. @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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How concerned are you about the possibility of falling? The Falls efficacy scale-International survey is here to record this. Log into the #CMTandMeApp to complete it. #charcotmarietooth @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @cmtausa
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We agree with Dottie from @Applied_Tx that the hope that research brings to the CMT community is a huge highlight of our patient conferences! Save the date for our 2022 Patient & Research Summit on October 1, 2022 - cmtausa.org/pfc
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The Quick Dash Outcome Measure is a survey measuring how you're coping with daily tasks such as using a knife to cut food. Take the time to think about you today, complete the survey! @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @CMTASTAR
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Lower limbs are an area of the body that are very impacted by #CMT. What is it like for you? Complete the "Lower extremity functional scale" to report your own experience. @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @CMTASTAR
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Do you have difficulty dressing or lifting? Tell us about your experiences by completing the ‘Lower Extremity Functional Scale’ survey in the CMT&Me app. #charcotmarietooth #surveys @ecmtf @AssoCMTFrance @Federacion_ASEM @ACMT_Rete @CMTUnitedKdom @CMTNeuropathy @CMTASTAR
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