ECMTF

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

[Peripheral Nerve Society (PNS) @PNSociety1]

Read this 2022 Top Accessed article for FREE in JPNS: https://t.co/bebRkbrsSG Want to see more? Join the PNS today! #BestofJPNS #openaccess

[Charcot-Marie-Tooth Association @cmtausa]

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: https://t.co/auRgJJrPeY

[CMT & Me @CMTandMeApp]

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

[ECMTF @ecmtf]

#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.

👉🏻 https://t.co/2cKr5We6SH

#CMTDisease #CharcotMarieTooth

[ECMTF @ecmtf]

#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: https://t.co/wbqRAoBRUJ

#CMTDisease #CharcotMarieTooth

[ECMTF @ecmtf]

"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.
👉🏻 https://t.co/2E40CMuobo

#CMTDisease

[ECMTF @ecmtf]

#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.

🖱 https://t.co/oIsQrq3XWC
#CMTDisease

[ECMTF @ecmtf]

#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: https://t.co/y35Aq0i1QI

#CMTDisease #CharcotMarieTooth

[ECMTF @ecmtf]

💬 "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!

https://t.co/20gnJZx05K

[ECMTF @ecmtf]

#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

https://t.co/oIsQrq3XWC
#CMTDisease

[ECMTF @ecmtf]

#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
https://t.co/M8knezk951

#CMTDisease

[ECMTF @ecmtf]

"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 : https://t.co/PkDL2juslY

#CMTDisease

[ECMTF @ecmtf]

#Didyouknow 🧬

Charcot-Marie-Tooth disease is an inherited, genetic condition affecting the nerves in feet, legs, hands and arms.

👉 Like, share, spread the message 📡!
🖱 https://t.co/oIsQrqlzlc

[ECMTF @ecmtf]

#News
The European CMT Federation welcomes the Czech Republic CMT Association as an Associate Member of the European CMT Federation community.🎉

The Czech Republic CMT Association is one of the oldest in Europe; it was founded in June 1999!

👉🏻 https://t.co/xLPeJ26Knl

[ECMTF @ecmtf]

#Didyouknow 🧬

Charcot-Marie-Tooth disease is an inherited, genetic condition affecting the nerves in feet, legs, hands and arms.

👉 Like, share, spread the message 📡!
🖱 https://t.co/oIsQrqlzlc

#CMTDisease #CharcotMarieTooth

[CMT & Me @CMTandMeApp]

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

[CMT & Me @CMTandMeApp]

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

[CMT & Me @CMTandMeApp]

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

[CMT & Me @CMTandMeApp]

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

[ECMTF @ecmtf]

#News

The European CMT Federation welcomes the Czech Republic CMT Association as an Associate Member of the European CMT Federation community.🎉

👉🏻 https://t.co/xLPeJ1P8YL./.

#CMTDisease #CharcotMarieTooth"