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 (LONDs) 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).
During the LONDC’s inaugural meeting, participants prioritized five potential projects based on identified needs. The LONDC Steering Committee selected the Common Experience Research and Awareness Campaign as the first project.
This project is designed to improve time to diagnosis for those with LONDs by identifying commonalities among LONDs to help streamline the referral pathways to neuromuscular specialists. The research phase of this project is complete. Learn more
Next, we aim to develop a physician-focused tool to aid in the recognition and referral of potential LOND cases, and a consumer-focused mnemonic to help individuals recognize early signs of LONDs and advocate for specialist care.
Learn more about the project here and stay tuned for updates!
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.
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.
© 2024 Late-Onset Neuromuscular Disease Consortium.
