ECMTF @ecmtf
We are a voluntary non-profit federation, formed by European national organizations supporting people affected by Charcot-Marie-Tooth disease (CMT) ecmtf.org Bruxelles, Belgium Joined July 2017-
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Read this 2022 Top Accessed article for FREE in JPNS: onlinelibrary.wiley.com/doi/10.1111/jn… Want to see more? Join the PNS today! #BestofJPNS #openaccess
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/f…
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
#Didyouknow? COULD IT BE CMT? CMT can be spotted from early childhood. Find out more about the symptoms and how to recognize them with Dr Matilde Laura. 👉🏻 cmt-awareness.com/whats-the-typi… #CMTDisease #CharcotMarieTooth
#News YOUR MENTAL HEALTH MATTERS TOO According to biology pHD Marta Figueiro, managing depression and fatigue participates in improving the quality of life of CMT patients. To know more: charcot-marie-toothnews.com/news/disease-s… #CMTDisease #CharcotMarieTooth
"I always want to remain active and ready for a treatment when it will come, whether through running, swimming, spinning, Pilates or weight training." Cynthia Lawrence, Disney Princess and Athlete testifies on her life with CMT. 👉🏻 cmtausa.org/get-involved/m… #CMTDisease
#Didyouknow? There are currently no curative or disease-modifying treatments for CMT. Patient management is conservative, with physiotherapy, occupational therapy, technical aids, orthoses, pain treatments and rarely orthopaedic surgery. 🖱 ecmtf.org #CMTDisease
#News Researchers at Washington University School of Medicine of St. Louis are working toward a treatment for neurogenerative diseases. Great news, research is the key to the future! To read the whole article: medicine.wustl.edu/news/new-strat… #CMTDisease #CharcotMarieTooth
💬 "I only received the diagnosis when I was 36 years old. This means that the on road there were always new anomalies paving the way". Heike, from Germany, has a message for you! Watch this video to know more about the daily life of a CMT patient! cmt-awareness.com/heike-loosens-…
#Didyouknow? 👉🏻 Here are two of the main forms of CMT caused by different mutations in the genes: 🧬 Demyelinating (CMT1) – affects the myelin sheath insulating and nourishing the nerve’s axon. 🧬 Axonal (CMT2) – directly affects the axon ecmtf.org #CMTDisease
#News 🔙 Time to do a little throwback! In October, during a meeting of orthopaedic surgeons, actors mimicked people with CMT to make the doctors react. 👉🏻 You can find here a video clip about this happening cmt-awareness.com/happening-rais… #CMTDisease
"At first glance, it just turned into an invisible disability and it is also difficult to simply be taken seriously" Heike, from Germany, has a message for you! Watch this video to know more : youtube.com/watch?v=Ze9llg… #CMTDisease
#Didyouknow 🧬 Charcot-Marie-Tooth disease is an inherited, genetic condition affecting the nerves in feet, legs, hands and arms. 👉 Like, share, spread the message 📡! 🖱 ecmtf.org
#Didyouknow 🧬 Charcot-Marie-Tooth disease is an inherited, genetic condition affecting the nerves in feet, legs, hands and arms. 👉 Like, share, spread the message 📡! 🖱 ecmtf.org #CMTDisease #CharcotMarieTooth
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
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
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
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
#News The European CMT Federation welcomes the Czech Republic CMT Association as an Associate Member of the European CMT Federation community.🎉 👉🏻 c-m-t.cz./. #CMTDisease #CharcotMarieTooth"
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