On June 5, 2026, C-Path’s Critical Path for Rare Neurodegenerative Diseases (CP-RND) Consortium brought together partners from the FDA, NIH, FNIH, and the broader community to share progress from collaborative efforts across ALS and other rare neurodegenerative diseases, including work supported under the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Act. Presentations demonstrated how coordinated approaches are improving how research is conducted, measured, and translated into action, while underscoring the role of strategic partnerships in accelerating research and advancing more patient-centered research and development.
A key focus of the program was the importance of engaging the lived experience community in research, with individuals impacted by rare neurodegenerative diseases sharing perspectives that have helped shape research priorities and drive meaningful change. The meeting also looked across diseases to identify common challenges, opportunities for collaboration, and priorities for the future. Together, these discussions highlighted the growing momentum in the field and reinforced the value of partnership and collective effort in advancing progress across the rare neurodegenerative disease ecosystem.
