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LONDC Implements New Tools for Diagnosis

Feb 4, 2026, 15:15 by Maggie Schmidt (Admin)

The Late-Onset Neuromuscular Disease Consortium (LONDC) continues to make significant strides in advancing its first project, the Common Experience Research and Awareness Campaign. This campaign aims to reduce delays and barriers to diagnosis for individuals with late-onset neuromuscular diseases (LONDs) by developing tools that empower both patients and clinicians to facilitate faster, more accurate referrals to neuromuscular specialists.

About the LONDC

The Late-Onset Neuromuscular Disease Consortium (LONDC) is an action-oriented forum for collaboration among clinicians, advocates and patients, industry, and other stakeholders to improve the experiences and care of people living with late-onset neuromuscular diseases (LONDs).

LONDC Annual Meeting Highlights
On Oct. 28, 2025, the LONDC convened its fourth annual meeting in San Francisco, California, ahead of the AANEM Annual Meeting. This meeting brought together a diverse group of stakeholders, including clinicians, patient communities, and industry representatives. Highlights reflecting the positive momentum and progress included:

Introduced the Clinical Tool to Support Recognition & Referral of LONDs

The newly developed clinical tool designed to help first-line healthcare providers better recognize and refer patients with
potential LONDs was unveiled.
This tool was informed by key learnings uncovered from the LONDC’s primary research with physicians and patient
communities. For more information, visit the LONDC website (Late-Onset Neuromuscular Disease Consortium).
It was shaped by a consensus process involving 32 US-based neuromuscular specialists, neurologists, and physical medicine and rehabilitation physicians. Using a modified RAND/UCLA and Delphi methodology, two rounds of anonymous reviews were conducted and strong consensus (85% agreement) on the tool’s content and utility was achieved.There are a few more edits needed to finalize the tool, but the plan is to launch the tool in early 2026. Stay tuned

Secured Feedback on Consumer LOND Awareness Campaign Concepts

Early concepts for a consumer awareness campaign in support of recognizing LONDs and identifying their common symptoms were introduced. This campaign will educate the general public about LONDs and encourage self-advocacy and action.

Presented LONDC Research Findings in First Poster

At both NORD and the AANEM meeting, the LONDC publicly presented the first set of results from the LONDC‘s primary research with physicians: Challenges in Recognizing Late-Onset Neuromuscular Diseases (LONDs) Demonstrate Need for Education & Tools to Support Early Detection and Referral.

Highlighted Patient Advocacy Organizations Involved in LONDC’s Steering Committee

As the LONDC was founded to share best practices and foster collaboration, seven of the Consortium’s Steering Committee members shared updates on their priority initiatives and upcoming projects, offering valuable insight into the work being done throughout the LOND community. Learn more about each group and their efforts by visiting their websites:

The ALS Association | als.org

GBS | CIDP Foundation International | gbs-cidp.org

Hereditary Neuropathy Foundation | hnf-cure.org

Kennedy’s Disease Association | kennedysdisease.org

The Lambert-Eaton LEMS Family Association | lemsfamily.org

Myasthenia Gravis Association | mgakc.org

Myositis Support & Understanding | understandingmyositis.org

Neuromuscular Disease Foundation | curegnem.org

Pompe Alliance | pompealliance.com

Looking Ahead to 2026

The LONDC is focused on finalizing both the clinical tool and the consumer campaign. These resources will be integrated into a comprehensive communications strategy, supported by the launch of a website to house and disseminate these materials and other community resources.

Interested in piloting the tool?

The LONDC is exploring opportunities to pilot the clinical tool with clinicians and institutions interested in evaluating the impact and usability of this tool in real-world settings. Any clinicians or practices interested in collaborating are encouraged to contact LONDC@smithsolve.com to learn more.

Diagnostic Tool and Campaign Launch

The LONDC team will exhibit at the upcoming Muscular Dystrophy Association (MDA) conference in March 2026 where the consumer awareness campaign and resource landing page will be launched.

Support the LONDC in 2026

As always, the LONDC’s plans for the coming year rely on continued funding through sponsorships and grants. Sustained support is essential to ensure the long-term success of the LONDC and to drive meaningful change for individuals affected by LONDs. As the exciting next steps of the LONDC’s work begin, your conversations about partnerships, collaborations, and sponsorships are welcomed.

The LONDC welcomes additional perspectives and clinical contributors; please contact LONDC@smithsolve.com if you are interested in participating in this work.

Visit the LONDC website londc.neuromuscularfoundation.org to sign up for the LONDC newsletter and to learn more.

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