The first biennial GBS|CIDP Foundation Leadership Collaborative convened in Boston!
Every two years, the Foundation will bring together leadership from our Global Medical Advisory Board and other key experts to address emerging challenges that disrupt the treatment, care, or innovation in GBS, CIDP, and MMN.
This year’s Collaborative began by listening to patients. In an initial meeting, patients shared their insights and interpretations of terminology commonly used in CIDP. A paper was then developed to reflect these perspectives, ensuring that the patient voice would guide expert discussions.
Subsequently, key opinion leaders—including physicians, researchers, and regulatory experts—met to align and clarify terminology frequently used across clinical care, research, and regulatory frameworks. Together, they reached consensus on five critical terms, which will be presented at the upcoming Peripheral Nerve Society meeting. A white paper will follow to further share these findings.
Thanks to this collaboration, the global patient community benefits from a unified effort to improve communication, care, and outcomes. We are deeply grateful for the dedication of this remarkable group of leaders working toward a better future for our community.
Participants: the GBS|CIDP Foundation team, Chelsey Fix, Director of Advocacy and Research, and Kelly McCoy, Director of Patient Engagement. The KOL Steering Committee, Dr. Jeff Allen, Dr Claudia Sommer, Dr. Filip Eftimov, and Dr. Luis Querol.
