European CMT Federation

Did you know that 4 in every 10,000 people are born with CMT? While it may be classified as “rare,” rare doesn’t mean few. Over 180,000 people in Europe and more than 3 million worldwide live with CMT, facing challenges that impact their mobility, strength, and sensation. CMT is a progressive condition that damages the peripheral nerves, which send signals between your brain, spinal cord, and muscles. This disruption can cause muscle weakness, loss of sensation, balance problems, and foot deformities. To learn more, follow us and browse to the cmt-awareness.com website. #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy

Show your support for Charcot-Marie-Tooth (CMT) Awareness in just a few steps! Here’s how: 🟦Step 1: Go to Canva.com or open the Canva app on your device. If you’re new to Canva, you can create an account for free. 🟦Step 2: Locate the frame by clicking on the link provided by CMT resources, or search "CMT Awareness Frame" in Canva. 🟦Step 3: Upload your image: Click “Uploads” in the toolbar to select a photo from your device. Adjust your photo: Drag, resize, and position it within the frame so it fits perfectly. 🟦Step 4: Click the download button in the top right corner, select your preferred file format (PNG or JPEG), and save it to your device. 🟦Step 5: Show your support by posting your frame and using it as your profile picture on your social media accounts! Tag European CMT Federation and use the campaign hashtag #StepTogether #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy #Canva

Living with Charcot-Marie-Tooth (CMT) means facing daily challenges that many take for granted. From struggling to walk due to muscle weakness, to difficulty maintaining balance, even simple tasks like buttoning a shirt or opening a bottle can become overwhelming. CMT affects the nerves, leading to a loss of sensation in the hands and feet, making mobility and dexterity harder over time. Let’s support those with CMT by spreading understanding of this disease! Credits: CMTUK ACMT-Rete per la Malattia di Charcot-Marie-Tooth Federación ASEM -Federación Española de Enfermedades Neuromusculares CMT ISRAEL Charcot-Marie-Tooth Association Hereditary Neuropathy Foundation CMT Research Foundation #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy

Join us for the first episode of CMT Awareness Webinar Series! 🗓 Date: November 2, 2024 🕥 Time: 10:30 AM - 12:00 PM CET 📍 Platform: Microsoft Teams 👩⚕️ Speaker: Dr. Med Maike F. Dohrn 💡 Topic: Seriousness and Early Symptoms of CMT: A User Manual This is a fantastic opportunity to learn from Dr. Maike F. Dohrn, an awarded expert in the field, as she discusses the early signs of Charcot-Marie-Tooth (CMT) and its impact on daily life. Dr. Dohrn is a founding member and elected vice president of the European CMT Research Association (ECRA), part of the peripheral neuropathy taskforce of the European Reference Network (ERN) for neuromuscular diseases, and a board member of the FDA-approved ClinGen expert panel for hereditary neuropathies. Her research and clinical work span Germany, Portugal, and the U.S., earning her numerous awards, including the CMTA 40-under-40 award. Don't miss out—register now! Registration link: https://lnkd.in/eNUSmDKB Photo: Nordrhein-Westfälische Akademie der Wissenschaften und der Künste | Bettina Engel-Albustin 2023 (NRW AWK | Engel-Albustin) #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy NMD Pharma A/S Applied Therapeutics, Inc.

Starting with October, the European CMT Federation is running a three-month awareness campaign to advocate at European level for more understanding of Charcot-Marie-Tooth disease, early diagnosis and the need for research and support. We would like to extend our sincere gratitude to Applied Therapeutics, Inc. and NMD Pharma A/S Pharma, whose generous contribution has made this campaign possible. Their commitment to advancing research and treatment for Charcot-Marie-Tooth disease is invaluable, and their support enables us to reach a wider audience and make a greater impact.   We are equally grateful to our dedicated members, whose tireless efforts drive the success of this initiative. Without their passion and hard work, such an extensive campaign would not be achievable. Finally, to the CMT community—your resilience and advocacy inspire us every day. This campaign is for you, and we remain committed to raising awareness, improving access to care, and pushing for advances in research to bring hope and change to the lives of those affected by CMT. Together, we can make a difference.   #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy ACMT-Rete per la Malattia di Charcot-Marie-Tooth CMTUK Federación ASEM -Federación Española de Enfermedades Neuromusculares CMT ISRAEL Charcot-Marie-Tooth Association Hereditary Neuropathy Foundation CMT Research Foundation

Now it’s time to step together and capture the moments with your loved ones! Wherever you are, whoever you’re with, take a selfie and show your support to CMT, no matter the distance. 🌍 📌 Take your selfie 📷 📌 Share it on socials with #StepTogether 📌 Tag European CMT Federation to spread the awareness #CMT Awareness Frame link is below: https://lnkd.in/dYmSqtGc Let’s spread the word and stand with those living with CMT! 💙 Ready, set, snap! 🤳 #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy #Selfie

Myth or Fact? Let’s bust some myths about Charcot-Marie-Tooth! When it comes to Charcot-Marie-Tooth disease (#CMT), there are a lot of misconceptions floating around. Luckily, ECMTF and its members are here to provide with right information.  Don't worry. Now it's time to set the record straight! #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy

Meet Deea. She lives in Romania and she is diagnosed with Charcot-Marie-Tooth disease. Because of her medical condition, she faces a lot of challenges on a daily basis. Simple tasks like walking or even opening a bottle are daily struggles for her. Despite all challenges, Deea faces everything with remarkable courage and determination. She does not let such a disease stop her. She’s learned to adapt, finding creative ways to navigate life with resilience and grace.Instead of focusing on what she can’t do, Deea chooses to celebrate her small victories—whether it’s managing a short walk without falling or successfully completing a task without assistance. Deea's story is one of strength and hope. While CMT doesn’t have a cure yet, raising awareness and advocating for better resources can help improve the lives of those living with the condition.Let’s stand with Deea and others like her to support the European CMT Awareness Campaign.💙 #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy

Why is #CMT awareness important? Charcot-Marie-Tooth (CMT) disease affects around 300.000 people in Europe, yet it's still unfamiliar to many. Over 60% of people with CMT struggle with walking and face daily challenges—but their strength and perseverance are truly inspiring.   Raising awareness is extremely important for early diagnosis, better treatment, and support. Let’s spread the word and stand with those living with CMT!   #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy  

Although Charcot-Marie-Tooth has no cure yet, management of the disease primarily focuses on symptom management through: 🟦 Physical and occupational therapy: To maintain muscle strength and improve mobility 🟦 Orthesis, and assistive devices: To support weakened muscles and improve walking 🟦 Pain management: Through medications and techniques to alleviate discomfort 🟦 Surgical interventions: In some cases, orthopedic surgery may be used to correct foot deformities   Still, several drug candidates are currently being tested in clinical trials, aiming to target the underlying mechanisms of CMT. These research efforts are creating hope that disease-modifying treatments may become available in the future.  With joined efforts, people suffering with CMT in the world could have a brighter future and a higher quality of life!   #ECMTF #StepTogether #CMTawareness #CMTawarenessMonth #CMTawareness2024 #CharcotMarieTooth #RareDisease #Neuropathy #Peripheralneuropathy