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AMO Pharma to Participate in Myotonic Dystrophy Foundation Meet the DM Drug Developers Program on March 5, 2021

AMO Pharma to Participate in Myotonic Dystrophy Foundation Meet the DM Drug Developers Program on March 5, 2021
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NeuBase Therapeutics Reports Financial Results for the First Quarter of Fiscal Year 2021

NeuBase Therapeutics Reports Financial Results for the First Quarter of Fiscal Year 2021
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Canadian Neuromuscular Disease Registry increases patient access to research, clinical trials

Canadian Neuromuscular Disease Registry increases patient access to research, clinical trials The Canadian Neuromuscular Disease Registry (CNDR) was launched in 2010 to increase efficient patient access to cutting-edge research and clinical trials, to increase understanding of the natural history and epidemiology of neuromuscular disease across Canada, and to facilitate research collaboration. An assessment of CNDR s accomplishments, published in the Journal of Neuromuscular Diseases, found that it has been successful in securing funding and engaging the community over the past 10 years. With more than 4,000 enrolled patients, data from the registry have been used in over 125 research projects as of 2019, including clinical trial and research notifications, patient questionnaires, and data analyses around patient outcomes and care.

Neuromuscular disease registry helps patients access research, clinical trials, new genetic tests, and therapies

 E-Mail IMAGE: CNDR Projects: Total projects completed by the CNDR is shown by the line graph (right axis). Type of projects completed per year are shown by bar graph (left axis). view more  Credit: V. Hodgkinson et al./The Canadian Neuromuscular Disease Registry 2010-2019. Amsterdam, February 2, 2021 - The Canadian Neuromuscular Disease Registry (CNDR) was launched in 2010 to increase efficient patient access to cutting-edge research and clinical trials, to increase understanding of the natural history and epidemiology of neuromuscular disease across Canada, and to facilitate research collaboration. An assessment of CNDR s accomplishments, published in the Journal of Neuromuscular Diseases, found that it has been successful in securing funding and engaging the community over the past 10 years. With more than 4,000 enrolled patients, data from the registry have been used in over 125 research projects as of 2019, including clinical trial and research notifications, pat

Mother of Four Kids Who Have a Rare, Incurable Disease Pens Surviving Myotonic Dystrophy, to Help Other Families Cope

Mother of Four Kids Who Have a Rare, Incurable Disease Pens Surviving Myotonic Dystrophy, to Help Other Families Cope A progressive disease often missed, DM sufferers may seem apathetic or lazy News provided by Share this article Share this article SALT LAKE CITY, Jan. 12, 2021 /PRNewswire/  Having one child with a rare, incurable and often misunderstood genetic disease is tough enough but Ann S. Woodbury has four children and a husband with myotonic dystrophy (Dystrophia Myotonica, DM), a disease that is characterized by progressive muscle wasting and weakness. Ever since their diagnosis in 1998, Woodbury has been advocating for families like hers and educating physicians about the symptoms that can vary from individual to individual and affect multiple organs.

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