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

09/08/2026

ECMTF highlights new guidelines for Charcot-Marie-Tooth clinical trials, emphasizing flexible designs and patient-centric endpoints to accelerate therapies.

In recent years, clinical trials for CMT have faced unique challenges, with some missing primary endpoints despite showing real therapeutic potential. Driven by a global coalition of patient advocacy groups, clinicians, and pharma partners, this new publication sets a clear standard to overcome these hurdles.

The goal? Implementing flexible trial designs, more accurate functional endpoints, and biomarker integration to accelerate the path to effective therapies. Patients and care partners are at the heart of this framework.

Together, we are paving the way for the future of CMT research. 💪 📖

Read our article here: https://ecmtf.org/advancing-charcot-marie-tooth-research/

06/08/2026

💊🧬 The recent investigation by Science and Retraction Watch into the tragic, undisclosed death of a young patient during a gene-editing trial in China serves as a stark reminder: science needs time.

While the pursuit of innovative therapies for rare genetic conditions is crucial, it must never bypass rigorous oversight. Prioritizing speed over patient safety can lead to devastating consequences. The European CMT Federation firmly advocates for transparent, ethical, and meticulously regulated research.

True medical progress cannot be rushed. Patient safety must always remain the unquestionable foundation of clinical innovation 💚🩵

Read the full report:
🔗 https://www.science.org/content/article/exclusive-death-girl-chinese-gene-editing-trial-was-never-made-public

21/07/2026

If you missed the PNS Annual Meeting in Maastricht, don't panic: we took notes for you! 📝

A detailed report featuring all the most important CMT research updates discussed during the congress is finally online on our website. As always, we tried to translate the most complex concepts into practical, accessible information for everyone. In the text, you will find essential updates on emerging gene therapies, new biomarkers, and how these laboratory discoveries are turning into real improvements for our daily lives.

For the more curious and those who want to dive into the first-hand data, we have also embedded videos of some of the key presentations right inside the article. Science is moving fast, and we want to ensure our entire community can keep pace, fully aware and informed.

You can read the full article and watch the lectures by clicking directly on this link:

https://ecmtf.org/from-genes-to-daily-life-cmt-research-highlights-from-the-2026-pns-annual-meeting-in-maastricht/

Take your time to read it and let us know in the comments which of these breakthroughs gives you the most hope or caught your attention the most! 🧬

Peripheral Nerve Society

16/07/2026

🥾The strength of a community without borders!

On July 13th, Italian kinesiologist Morena Borsari set off on an incredible journey, walking 763 kilometers along the Via Podiensis from Le Puy-en-Velay to Saint-Jean-Pied-de-Port to raise awareness for Charcot-Marie

This adventure is much more than just a personal physical challenge. It perfectly embodies the mission of the ECMTF. By connecting the Italian association ACMT Rete per la Charcot Marie Tooth with CMT-France , this cross-border initiative shows exactly how European cooperation can break isolation and amplify the voices of patients well beyond national borders.

CMT affects roughly 1 in 2,500 people, yet it remains widely misunderstood and is frequently confused with ALS. Walking alongside Gino, ACMT-Rete's penguin mascot whose wobbly gait symbolizes the daily balance challenges faced by people with CMT, Morena is connecting with local communities to change these perceptions.

If you live anywhere along the Via Podiensis in France, Morena warmly invites you to meet up, share a moment, or even walk a few steps together. You can follow her ongoing journey and contact her directly on her Instagram account .medicalwellness to find out exactly where she is today. Together, we are stronger!

29/06/2026

Science, collaboration, and a shared vision: ECMTF is back from the Peripheral Nerve Society Annual Meeting in Maastricht

Being at the forefront of the largest global meeting on peripheral nerve disorders is not just an honour; it is a commitment to our community. We engaged with top-tier international researchers and clinicians to consolidate the relationships that fuel future breakthroughs for CMT.

This year, we brought the patient voice directly into the scientific arena with a dedicated poster presentation and a patient panel session, proving that when patients and researchers unite, the pace of innovation accelerates.

We are currently curating a comprehensive report on the most relevant findings from the conference, which will be available to our community soon.
Stay tuned—we are translating science into hope, one step at a time 💚🩵

Alexandre Hoyau Filippo Genovese Maike Dohrn

28/06/2026

Accessibility is a right, not an option.

One year ago, the European Accessibility Act came into force, making life easier for millions of people living with a disability or reduced mobility.

What changed?

✔️ More accessible products and services across the EU
✔️ Easier access to transport, education, and job opportunities
✔️ Better prices through fairer competition
✔️ More job opportunities for accessibility experts

Together, we’re shaping a more accessible, inclusive Europe. 💛

17/06/2026

Calling all researchers! 🧬 If you're ready to shape the future of cell and gene therapies, this one is for you.

At ECMTF, we know that tackling rare neuropathies like CMT means pushing the boundaries of ATMPs (Advanced Therapy Medicinal Products). That’s why we want to spotlight the BEYOND Postdoctoral Programme.

Coordinated by FONDAZIONE TELETHON , this initiative offers fully funded fellowships across top European institutes to bridge the gap between brilliant lab discoveries and the real-world treatments us patients actually need.

⏳ Dust off your CVs—the deadline for the first call is June 30, 2026.

👉 Check the details and apply here: https://www.beyond-cofund.eu/

11/06/2026

Next stop: Maastricht! 🇳🇱 We are incredibly excited to announce that we'll be heading to the Peripheral Nerve Society (PNS) Annual Meeting this week.

Our schedule is shaping up to be quite the marathon. We’ll be stepping up to moderate a panel and presenting a poster about the strategic outcomes and European-level data infrastructure work driven by the European CMT Federation (ECMTF). Seeing the science translate into real-world care makes every bit of the behind-the-scenes chaos worthwhile.

It’s going to be a fantastic opportunity to bring a direct, pragmatic patient perspective to the scientific discussions and connect with so many brilliant minds working on peripheral neuropathies.

If you’re going to be at , let’s connect! If you spot us navigating the poster halls with our proudly clumsy and wobbly gait, please come say hi! Let's chat about patient-partnered research, European data sharing, and how to get our community ready for what's next. 🐧💙💚

Peripheral Nerve Society

08/06/2026

Great news for our global Charcot-Marie-Tooth (CMT) community! 🌍🧬

ERDERA has just pre-announced its 2026 Clinical Trial Call (launching July 1st), and it is a significant step toward accelerating rare disease research.

Why this matters for CMT:
🌍 Multinational scale: Pooling data across borders is the most pragmatic way to advance treatments for rare conditions like ours.
🤝 Patient partnership: Every consortium must include a Patient Advocacy Organization, ensuring our community’s needs remain at the core of the research.

ECMTF is ready. We are willing to partner on research proposals that focus on high-impact CMT clinical trials. If you are developing a project that could bring us closer to a solution, we invite you to reach out. Let’s work together to drive the science forward.

📅 Info Webinar: July 6, 2026 (15:00 CEST)
🔗 Details: https://erdera.org/news/erdera-clinical-trial-call-2026-pre-announcement-and-key-dates/

24/05/2026

🔬 Clinical Trials & CMT: Where do we stand in research?

During the Educational Seminar at our 2026 General Assembly, we dived deep into the therapeutic journey and the current challenges in developing clinical trials for Charcot-Marie-Tooth disease.

The full video recording of Marzena Nelken’s (EUPATI Expert) session and summary article are now available on the official ECMTF website. This is an essential resource to better understand the direction of scientific research and the vital role patients play in this process.

👉 Watch the video and read the article here: https://ecmtf.org/clinical-trials-the-therapeutic-journey-and-challenges-for-cmt/

Adresse

ECMTF C/o Fondation Universitaire 11
Brussels
B-1000

Site Web

https://www.ecmtf.org/, https://cmt-awareness.com/, https://tinyurl.com/LetsStepTogether

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