The European Charcot-Marie-Tooth Federation (ECMTF) is proud to announce the successful completion of its continent-wide awareness campaign, “Let’s Step Together for CMT”, which concluded on december 2024. This initiative was designed to bring attention to Charcot-Marie-Tooth Disease (CMT), one of the most common inherited neurological disorders, and to amplify its recognition across Europe. By uniting patients, patient groups, medical professionals, pharmaceutical representatives, CMT ambassadors, advocates, and policymakers, the campaign aimed to enhance knowledge and understanding of CMT and foster a more inclusive community for those living with the condition. Altogether, this extensive campaign also aimed to disseminate information about groundbreaking research in the field of CMT.
1 in 2,500 babies are born with CMT
Charcot-Marie-Tooth Disease affects approximately 1 in 2,500 individuals, making it more prevalent than many realize. In Europe alone, it is estimated that over 300,000 people are living with CMT. Despite its prevalence, public awareness and understanding of the condition remain limited. Consequently, individuals with CMT often experience significant challenges, including delays in diagnosis and difficulties accessing appropriate care.
CMT manifests with symptoms such as muscle weakness, loss of sensation in the extremities, pain, fatigue, and issues with balance and mobility. In more severe cases, it can lead to complications like hearing, vision, or breathing problems, and some individuals may eventually require the use of a wheelchair.
Since its establishment, the European Charcot-Marie-Tooth Federation has continually worked to raise awareness about CMT across Europe. But even so, efforts still need to continue, as the general public, as well as many healthcare professionals, still remain unfamiliar with the condition or the proper management it requires. Ongoing efforts to bridge this knowledge gap are essential, as they can lead to significant improvements in the lives of those affected by CMT.
Changing The Narrative: A Collaborative Effort Across Europe
“Let’s Step Together for CMT” Awareness Campaign actively worked to change this narrative through a diverse range of initiatives aimed at mobilizing Europe. A series of webinars were held regularly, covering various topics including educational sessions, presentations by specialists and researchers on scientific advancements, and discussions about ongoing clinical trials. These webinars also featured meaningful patient stories, offering personal insights into the daily challenges of living with the condition.
Moreover, the campaign’s strong social media presence helped to increase understanding and improve knowledge of CMT, educate the public, encourage engagement, and foster a sense of community by sharing personal stories and resources, such as visuals with disease symptoms that could easily be recognized.
The European Charcot-Marie-Tooth Federation envisioned this campaign as a pivotal moment in its continuous efforts to increase awareness and improve the quality of life for those affected by CMT.
According to Filippo Genovese, President of the ECMTF, “Charcot-Marie-Tooth Disease is more than a medical condition; it’s a daily challenge that so many individuals and families across Europe face. This campaign was about fostering solidarity, inspiring hope, and driving meaningful change. We wanted that everyone—patients, caregivers, and professionals—would feel part of a united effort to make a difference.”
How to Stay Involved
Although the awareness campaign has concluded, the Federation encourages the CMT community and the general public to continue engaging in raising awareness. Following ECMTF’s social media accounts, participating in online events, or simply sharing information on ECMTF pages can still make a significant impact (campaign materials are available on: https://cmt-awareness.com/).
Advocating to policymakers remains an important action to ensure that Charcot-Marie-Tooth disease continues to be recognized as a priority within public health agendas. Engaging with institutions at both the national and European level can help secure funding for essential research, promote equitable access to clinical trials, drive innovative treatments, and standardize care across member states.
The Federation extends its gratitude to Applied Therapeutics and NMD Pharma for their commitment and generous funding, which made the “Let’s Step Together for CMT” Awareness Campaign possible.
