CONSHOHOCKEN, PA — The GBS | CIDP Foundation International is making strides to increase awareness of Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and related conditions by launching a global campaign this May, in honor of GBS and CIDP Awareness Month. The campaign focuses on educating healthcare providers and supporting patients worldwide.
“This month, we honor the strength and resilience of GBS and CIDP patients, who face one of the most frightening and life-altering experiences imaginable,” stated Lisa Butler, President and CEO of the Foundation. “We’re also working to educate providers about the disease — and the need for better diagnostics and more effective therapies.”
GBS is a rare autoimmune disorder that attacks the nervous system, leading to symptoms such as rapid onset numbness, weakness, and in many cases, paralysis. An estimated 6,000 people in the United States are diagnosed with the condition annually. CIDP, while less acute, is a chronic neurological disorder that similarly impacts mobility. Long-term effects for GBS patients often include chronic pain, muscle weakness, and fatigue, with some cases resulting in permanent disability.
Treatment options for GBS remain limited, with no FDA-approved therapies available. Intravenous immunoglobulin (IVIG) and plasma exchange are widely used, but these treatments do not work for all patients and fail to provide a cure. The lack of significant advancements in treatment since the 1980s underscores the urgent need for more research.
The Foundation’s Awareness Month campaign incorporates educational initiatives like the “Get On The Map for May” program, which connects patients and providers to resources, including monthly support groups, local chapter meetings, and an international symposium. Key events in the campaign include webinars and virtual community programs, such as a coffee chat for neurology nurses on May 22.
“Our goal is to help close the knowledge gap for healthcare providers so that all GBS and CIDP patients can receive a timely diagnosis and appropriate care when facing this terrifying disease,” Butler emphasized. “People suffering from GBS and CIDP deserve world-class care — and we’re working to ensure that they receive it.”
Through its efforts this month, the Foundation is taking a significant step toward enhancing public understanding and improving the healthcare landscape for those affected by these challenging conditions.
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