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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


Oct. 27, 2023
Project Plan Available: Common Experience Research and Awareness Campaign
Oct. 27, 2023
Project Plan Available: Common Experience Research and Awareness Campaign

Steering Committee

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.

Current Members

If you are part of an advocacy organization and are interested in becoming 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
  • The ALS Association
  • GBS | CIDP Foundation International
  • The Lambert-Eaton LEMS Family Association
  • MG Holistic Society
  • Myasthenia Gravis Association
  • Myasthenia Gravis Foundation of Michigan
  • 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
Thank you to our sponsors for supporting the LONDC and its initiatives!

2024 Champions

argenx logo
Catalyst Logo
UCB Logo


Johnson & Johnson logo

Thank you to the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) for providing support for the LONDC administrative fees.

How can my organization get involved with the LONDC?

Contact us for sponsorship opportunities or to learn how your organization can participate in collaborative efforts to address unmet needs of individuals affected by late-onset neuromuscular diseases. Individuals can also help fund the ANF and LONDC by donating here.