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. The meeting convened nearly 25 stakeholders 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 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.