Late-Onset Neuromuscular Disease Consortium Founded to Improve Care for Adults Across Neuromuscular Conditions

Recognizing an opportunity to better serve people living with rare neuromuscular conditions diagnosed in adulthood, the American Neuromuscular Foundation (ANF) founded the Late-Onset Neuromuscular Disease Consortium (LONDC) to facilitate collaboration across advocacy organizations, academia, clinical practice, industry, and other stakeholders. The LONDC aims to identify and establish community-wide, long-term goals and projects to drive awareness, improve education, and address gaps in overall care.

The ANF held the inaugural meeting of the LONDC prior to the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) annual meeting on September 20, 2022, in Nashville, Tenn. We convened nearly 25 stakeholders including patient advocacy organizations, industry, and clinicians, representing a spectrum of late-onset neuromuscular diseases.

The main purpose of the inaugural meeting was to introduce stakeholders to the concept of the LONDC, gauge levels of interest, and begin to identify common challenges and potential workstreams for future cross-stakeholder collaboration. These efforts laid the foundation for the LONDC to identify and prioritize potential projects to pursue.

ANF also conducted pre-meeting interviews with advocacy organization representatives who could not attend in person. A critical component of the LONDC is its foundation in patient advocacy and its focus on community input as a driving force. Advocacy organizations will constitute the LONDC Steering Committee.

Click here to download the meeting report.