European CMT Federation

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European CMT Federation European Charcot-Marie-Tooth Federation

The European Charcot-Marie-Tooth (aka CMT) Federation is a nonprofit organization created to unite all the CMT advocacy groups across Europe to help raise awareness and promote better care for people with CMT, the most frequent peripheral neuropathy

12/10/2026

Participation is not the same as performance.

Being active isn’t only about speed, distance, or results.

For people living with CMT, movement and participation can look different from one person to another. What matters is not meeting a single performance standard, but having the opportunity to take part in ways that work for the individual.

Participation can mean moving at your own pace, adapting an activity, using support when needed, or simply being part of the experience.

There is no single way to be active.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

🧠 Mental health is health. For the CMT community, it is a critical and often invisible challenge.On this , recent findi...
10/10/2026

🧠 Mental health is health. For the CMT community, it is a critical and often invisible challenge.

On this , recent findings from the Rare Barometer survey highlight the heavy emotional toll carried by our community:
📊 7 out of 10 people living with Charcot-Marie-Tooth (CMT) disease and their families report poor mental health.
💬 45% report clinically significant anxiety symptoms.
😔 41% experience moderate to severe depression symptoms.
🚫 While 72% needed professional psychological support, only 49% received it.

Living with a progressive neurological condition like CMT affects far more than mobility—it profoundly impacts emotional well-being and daily mental health.At ECMTF, we stand for comprehensive healthcare that integrates specialized psychological support into CMT care pathways from diagnosis onwards. Physical and mental health must be addressed together.💙

You are not alone. Let’s break the isolation, raise awareness, and demand better access to mental healthcare for rare conditions.

EURORDIS-Rare Diseases Europe

Every patient journey is different.CMT does not affect every person in the same way.The first signs, the path to diagnos...
09/10/2026

Every patient journey is different.

CMT does not affect every person in the same way.

The first signs, the path to diagnosis, the impact on everyday function and the types of support needed can all vary from one individual to another.

Experiences may also change over time. What matters at one stage of life may be different at another.

Understanding CMT means looking beyond a single story and listening to the diversity of experiences across the community.
One condition. Many journeys.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

Every patient journey is different.CMT does not affect every person in the same way.The first signs, the path to diagnos...
09/10/2026

Every patient journey is different.

CMT does not affect every person in the same way.

The first signs, the path to diagnosis, the impact on everyday function and the types of support needed can all vary from one individual to another.

Experiences may also change over time. What matters at one stage of life may be different at another.

Understanding CMT means looking beyond a single story and listening to the diversity of experiences across the community.
One condition. Many journeys.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

07/10/2026

Independence does not always mean doing everything by yourself.

For people living with CMT, independence may involve support from others, assistive devices, orthoses, mobility aids or adapting the way everyday activities are approached.

Support and independence are not opposites. What matters is having the tools, choices and assistance needed to participate in everyday life in a way that works for the individual.

There is no single way to be independent.
Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

Léna, is my little CMT warrior ❤️

CMT is more than mobility.Walking and balance are important parts of living with Charcot-Marie-Tooth, but they are not t...
05/10/2026

CMT is more than mobility.

Walking and balance are important parts of living with Charcot-Marie-Tooth, but they are not the whole picture.

For some people, CMT can also involve reduced hand strength and dexterity, sensory changes, fatigue and pain, affecting the ability to carry out everyday activities.

These experiences vary from person to person. Understanding CMT means looking beyond a single symptom and listening to how the condition affects daily life as a whole.

During CMT Awareness Month, let’s make the full experience more visible.

See the reality. Hear the experience. Build understanding.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

Not every impact of CMT is immediately visible.Changes in strength, fatigue, balance, sensation, dexterity or the effort...
02/10/2026

Not every impact of CMT is immediately visible.

Changes in strength, fatigue, balance, sensation, dexterity or the effort required for everyday tasks may not always be obvious to others.

The experience of CMT can look different from one person to another, and symptoms that are not visible can still have a meaningful impact on daily life.

Greater awareness begins by looking beyond what is immediately visible — and by listening to lived experience.
Invisible does not mean insignificant.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

01/10/2026

October is Charcot-Marie-Tooth Awareness Month in Europe.

Throughout the month, we will continue to bring greater visibility to the realities of living with CMT, the experiences of patients and families, and the importance of better understanding across the wider CMT community.

Awareness is where the conversation begins. Listening, learning and recognising lived experience are what help move it forward.

See the reality.
Hear the experience.
Build understanding.

Let’s for CMT.

🔗 cmt-awareness.com
🔗 ecmtf.org

Clinical readiness is about more than being ready for a clinical trial.It means having the knowledge, data, outcomes mea...
30/09/2026

Clinical readiness is about more than being ready for a clinical trial.

It means having the knowledge, data, outcomes measures, clinical expertise, and care pathways needed to monitor progression and respond effectively.

It also means understanding what matters to people living with CMT.

Natural history studies, reliable registries, meaningful outcome measures, appropriate clinical expertise, and patient experience all contribute to a stronger foundation for research and care.

Clinical readiness is not a single step. It is a connected system built before a treatment becomes available.

cmt-awareness.com
ecmtf.org

28/09/2026

Living with CMT can involve many different forms of care, support, and coping throughout the day.

From personal routines and mobility aids to transportation and physical activity, everyday life may require a range of practical adaptations.

These experiences are not separate from clinical understanding. They help show what
function, participation, and support mean in real life.

By looking at the full patient journey, we can better understand what meaningful care should consider.

cmt-awareness.com
ecmtf.org

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ECMTF C/o Fondation Universitaire 11
Brussels
B-1000

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