Topline results from Premier trial on CMT1A
European CMT Federation
by Marina
3M ago
We are pleased to share the press release published this morning on the analysis of the first data from our phase 3 trial of the PREMIER study in CMT1A.  Early indicators suggest results requiring more in-depth and comprehensive analysis but confirm the high safety profile of the product. Considering these initial results, Pharnext plans to continue analyzing the data, this analysis will help determine the next steps toward potential marketing authorization. The post Topline results from Premier trial on CMT1A appeared first on European CMT Federation ..read more
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¡Bienvenida asociación CMT España!
European CMT Federation
by Marina
4M ago
The European CMT Federation welcomes with joy a new Associate Member: CMT España, the first national CMT association in Spain. Thanks to an event organized by El Motor de Tus Pasos, the CMTs, who had long hoped for a national association, found the strength and means necessary to create it. The purpose of CMT Spain is to give visibility to Charcot Marie Tooth in Spain, organize events to raise funds and allocate them to research into the disease. The cooperation between CMT Spain and ECMTF will help make the CMTs’ voices better heard. Together we are stronger! The post ¡Bienvenida asociación ..read more
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Welcome CMTA
European CMT Federation
by Marina
10M ago
We are glad to announce that the US association CMTA joined the European CMT Association as Associate Member. The CMTA is the leading patient advocacy organization driving CMT research. Its mission is to develop treatments and a cure for the 3 million people worldwide who live with the disease while improving the quality of life for patients and their families. The CMTA has invested $23.5 million in the search for a cure. Its Strategy to Accelerate Research (STAR) brings world-renowned CMT researchers, pharmaceutical and biotechnology partners, and patients to accelerate scientific breakthrou ..read more
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Welcome CMT RF
European CMT Federation
by Marina
1y ago
We are delighted to welcome the CMT Research Foundation as an Associate Member of the European CMT Federation community. The CMT Research Foundation is a patient-led, non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease. The CMT-RF’s single mission is to raise funds to invest in science that will lead to treatments and cures for CMT. To know more about CMT RF, click here. We are happy to share our way with such active and positive attitude partners.  Together, we are stronger! The post Welcome CMT RF appeared first on European CMT Federation ..read more
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Talk CMT Competition
European CMT Federation
by Marina
1y ago
We want to celebrate Rare Disease Day by launching an initiative that appeals to your creativity. With Socking Clumsy and Talk-CMT Instagram page, we invite you to send us an inspiring or funny phrase to print on socks. Socks? Yes! Socking Clumsy is a Lebanese socks brand that raises awareness on CMT, owned by C.G CONSULTANT Group SAL. To learn more about it: https://sockingclumsy.com/ Take your chance to enter a fun contest and help raise awareness about CMT! Submissions will be published in a ‘Talk CMT’ digital book. The winning sentences will be shared on our social media, and each of the t ..read more
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Welcome to the Czech Republic CMT Association!
European CMT Federation
by Marina
1y ago
We are delighted to welcome 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. The association aims to defend, promote and achieve the interests and needs of disabled persons with Charcot-Marie-Tooth disease in cooperation with state and local government in the Czech Republic and international institutions. Click here or visit the Czech Republic CMT Association website to know more. The cooperation between the European CMT Federation and the Czech Re ..read more
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Welcome WonderFlora and CMT!
European CMT Federation
by Marina
1y ago
The European CMT Federation welcomes the WonderFlora and CMT Foundation as a new Member! The WonderFlora and CMT Foundation is a new born Hungarian organization whose purpose is to make CMT known and to help patients. To learn more about WonderFlora , please click here, or visit the Foundation website. The ECMTF family grows, we are happy for that as we believe in the power of cooperation. Together we are stronger! The post Welcome WonderFlora and CMT! appeared first on European CMT Federation ..read more
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CMT Gene Therapy
European CMT Federation
by Marina
1y ago
European Associations’ support to research on CMT We are proud to give the news of a fruitful synergy among the European CMT Federation members to support CMT research. In June 2020, the Italian association ACMT-Rete and the French association CMT-France, both founding members of the ECMTF, officially supported the Mygenter gene therapy project in the scope of the EJP RD call for proposal 2020. The Mygenter project is a gene therapy using a viral vector to introduce gene expression modifying tools directly in the target cell, configuring itself as an attractive alternative to pharmacological ..read more
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Willkommen Deutschland!
European CMT Federation
by Marina
1y ago
We are delighted to welcome DGM as a Full Member in the European CMT Federation. The DGM (German Society for Muscle Diseases e.V.) based in Freiburg, is the largest and oldest German self-help organization for people with neuromuscular diseases. Within DGM there are 11 diagnosis groups for different neuromuscular diseases, including one dedicated to CMT.  The diagnosis group CMT / HMSN in the DGM was founded in 2020 to inform, promote, advertise, and share experience and knowledge. Our community enriches with an essential new member for the interest and benefit of CMT patients. Together ..read more
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Research into facilitators and barriers to home-based physiotherapy!
European CMT Federation
by Marina
1y ago
All CMTs know that regular and constant physiotherapy is essential to counteract the symptoms of the disease. To ensure consistency of treatment, patients can benefit from digital solutions, but these must fit their needs. The Nivel Netherlands Institute for Health Research is conducting a study to identify barriers and facilitators of adherence to prescribed physical therapy exercises in people with neuromuscular disorders. More details are at your disposal here. Everyone can participate in this project by joining an online focus group together with their caregiver to explore barriers and fa ..read more
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