[CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020
This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month of Action” include: Online advocacy training videos; Speaking with Members of Congress and their staff; Sharing key advocacy collateral. Currently, there are 200 GBS|CIDP advocates who have supported legislation and policy issues that impact access to therapy and the quality of healthcare for our patient community. Registration is required to participate in October “Month of Action.” A step-by-step guide, including a summary of current legislative agenda, can be found soon at:
“The GBS Foundation International is dedicated to advancing policy and legislation that improves, protects, and preserves access to timely care and appropriate treatment in the appropriate setting for GBS, CIDP, and variants patients.”
– Chelsey Fix, Advocacy Manager, GBS-CIDP Foundation International
About the GBS|CIDP Foundation International
Guillain-Barre Syndrome (GBS) is a very rare autoimmune disorder that affects the body’s peripheral nerves located outside the brain and spinal cord. The condition can present suddenly, beginning with numbness or tingling in the extremities, and progress to total paralysis within a matter of hours. GBS affects both genders, all ages, and all ethnic groups. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) is characterized by progressive weakness and sensory loss in the patient’s arms and legs. CIDP usually develops over a course of 6-to-10 weeks and occurs on both sides of the body. CIDP is frequently not self-limiting and, if left untreated, may progress to wheelchair dependence.
According the GBS|CIDP Foundation’s Executive Director Lisa Butler, “Both conditions and its variants are extremely rare. GBS affects 2 people each year in every 100,000. The prevalence of CIDP is estimated to be as many as 9 in 100,000 individuals.”
For more information contact Director of Marketing and Communications, Maureen Neville, Maureen.firstname.lastname@example.org. 610-667-0131Need more resources? Join our community!