
The GBS|CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions through a commitment to support, education, research and advocacy. The steadfast commitment to improving lives of patients impacted by these conditions propagated the responsibility to convene key opinion leaders, including clinicians, researchers, and patients, on a bi-annual basis to address an emerging problem and unmet need of the rare, autoimmune peripheral neuropathy community.
Vision
Every other year, the Foundation will collaborate with key leadership from the Global Medical Advisory Board (GMAB) to identify an emerging problem disrupting the treatment, care, or innovation of treatment for GBS, CIDP, MMN, or related conditions. The Foundation and GMAB will collaboratively identify global key opinion leaders (KOLs) to convene during a weekend-long meeting to deliver tangible solutions to the problem and other timely unmet needs of the community. Cross-disciplinary KOLs will be invited to participate on an as-needed basis such that the neuropathy community can learn from the experience of other disease states. The meeting will include a facilitator and a whitepaper should be published in a high-impact journal.
The Foundation is committed to a globally patient-centric approach to problem solving for whatever emerging problem faces the community. To incorporate the patient voice into the process, the Foundation will also convene a global patient meeting before the KOL workshop, and the facilitator will create a report of the patient voice on the identified topic to be considered and utilized by the KOLs during the workshop.
This weekend marks the first phase of the Leadership Collaborative, the patient meeting! Stay tuned for updates.