STRENGTHENING the global effort to CURE neuromuscular disease

To better serve those living with late-onset neuromuscular diseases, the American Neuromuscular Foundation (ANF) established the Late-Onset Neuromuscular Disease Consortium (LONDC) to bring the community together and foster collaboration to improve care, education, and quality of life.

The LONDC is an action-oriented forum for collaboration among clinicians, advocates and patients, industry, and others to improve the experiences and care of people living with late-onset neuromuscular diseases (NMDs). According to the EveryLife Foundation, individuals with rare diseases wait an average of 6.3 years from symptom presentation to receive a confirmed diagnosis and have an average of 17 clinical encounters during this time. Delays in diagnosis also delay treatment and allow a disease more time to advance without intervention, which is what the LONDC aims to address. As a part of those efforts this year, the LONDC began the research phase of its first project, the Common Experience Research and Awareness Campaign.

Through this project, the LONDC looks to reduce the wait time and barriers to diagnosis by developing and providing tools to patients and providers to aid in quicker recognition of a potential NMD. Quicker identification helps facilitate faster referrals to specialists and speedier access to treatments where possible. These tools will be created from a consensus of common presenting symptoms across late-onset NMDs. The work will be informed by the current research, which consists of interviews with 68 patients representing 14 different NM diagnoses, survey responses from 60 primary care physicians and 60 general neurologists, and input from numerous key opinion leaders. The LONDC aims to complete this research in 2024, establish consensus, and publish results in the first half of 2025.

To learn more about the ANF and LONDC’s efforts, visit londc.neuromuscularfoundation.org.