Sitting at the intersection of research, clinical care, patient advocacy, and industry innovation, the American Neuromuscular Foundation (ANF) observed a need to better serve those living with late-onset neuromuscular diseases by bringing the community together and fostering collaboration to improve care, education, and quality of life. This is the rationale for establishing the Late-Onset Neuromuscular Disease Consortium (LONDC).
The LONDC Steering Committee consists of representatives from advocacy organizations that serve people impacted by neuromuscular conditions. Steering Committee members provide ongoing strategic direction, advocate for the LONDC and its initiatives, and oversee and drive projects forward in alignment with the Steering Committee governance.
The ANF held the inaugural meeting of the LONDC prior to the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) annual meeting. We convened nearly 25 stakeholders including patient advocacy organizations, industry, and clinicians to begin to identify common challenges and potential workstreams for future cross-stakeholder collaboration.
Contact us to learn how your organization can take part in collaborative efforts to address the unmet needs of individuals affected by late-onset neuromuscular diseases.
© 2023 Late-Onset Neuromuscular Disease Consortium.
