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About the LONDC

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 is designed to drive progress by:

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Identifying common challenges, needs, and opportunities across conditions

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Facilitating collaboration among multiple stakeholders

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Establishing community-wide goals and strategies

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Providing a forum to share updates and progress

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Supplementing work underway by community stakeholders

To become a Steering Committee member, complete the interest form here

Inaugural Meeting

September 20, 2022
Nashville, Tennessee

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.

Click here to download the meeting report

We thank the following organizations for their participation:

Pre-meeting interviews
  • Cure CMD
  • I AM ALS
  • Muscular Dystrophy Association
  • Myasthenia Gravis Foundation of Michigan
  • Myasthenia Gravis Association of Western Pennsylvania
  • The Speak Foundation
Inaugural meeting advocacy organization participants
  • GBS | CIDP Foundation International
  • MG Holistic Society
  • Myasthenia Gravis Association
  • Myasthenia Gravis Foundation of Michigan
  • The ALS Association
  • The Lambert-Eaton LEMS Family Association
  • The Myositis Association
Inaugural meeting industry participants
  • Alexion Pharmaceuticals, Inc.
  • Amylyx Pharmaceuticals, Inc.
  • argenx SE
  • Biogen Inc.
  • Catalyst Pharmaceuticals, Inc.
  • The Janssen Pharmaceutical Companies of Johnson & Johnson
  • Takeda

How can my organization get involved with the LONDC?

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.

Next Steps

Following publication of the inaugural meeting report, we anticipate the following steps:

  • Create a steering committee(s) to define project plan
  • Host a webinar to discuss the report summary
  • Share potential projects and prioritization for comment across stakeholders
  • Secure funding to support formation of governance structure and priority projects
  • Present project(s) to ANF board for approval
Thank you to our founding sponsors for supporting the inaugural meeting!


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