GBS|CIDP Foundation International

It's an exciting day in the MMN community! National Organization for Rare Disorders, Inc. (NORD) now offers a Multifocal Motor Neuropathy Patient Assistance program. Learn more here: https://lnkd.in/eEuExQJi

GBS|CIDP Foundation International at the PNS Annual Meeting in Montréal 🇨🇦

Foundation Board Members, Betsy Blake, PharmD, BCPS, FNAP and Chrissie Jenkins, LISW-CP raising awareness about the Foundation!

Join us for a dynamic conversation with two recipients of our Benson Fellowship Grant. Discover the latest insights into GBS, CIDP, and MMN research and get a glimpse of what the future of research may hold. Register to join us live on Thursday, June 20th at 11 am US ET. https://lnkd.in/eM5BK7Fx

We are thrilled to announce that Version 2.0 of our Patient Registry is LIVE! The registry consists of patient-reported data gathered through standardized surveys for our patient and care partner community to complete. The data we collect through the registry helps healthcare professionals pursue medical advancements and allows the Foundation to develop patient resources to fit the changing needs of our community. Visit gbs-cidp.iamrare.org to participate in the registry. Since this is a new version of the registry, we are asking all past participants to complete the new surveys. Questions? Contact registry@gbs-cidp.org.

MMN Advocate, Richard Sperry, and Advocacy Coordinator, Ellie Herman, joined the Plasma Protein Therapeutics Association (PPTA) on Capitol Hill this week! Joined by PPTA member companies, Ellie and Richard created awareness about the importance of plasma for the rare disease community. They also advocated for members from the House of Representatives to join the Congressional Plasma Caucus. Thank you to Richard and all of our patient advocates who bring the personal, patient perspective to our advocacy work!

Thank you Immunovant for allowing Kelly McCoy to share resources the Foundation provides our patient community! #GBSCIDPawareness

Kicking off GBS|CIDP Awareness month, the Foundation visited Capitol Hill with over 30 dedicated volunteers. They shared their powerful stories with Congressional staff, raising awareness about GBS, CIDP, MMN, and related conditions across 30+ offices. We also pushed for support on HR 5818, a bill championed by Representatives John Garamendi and Adrian Smith, advocating for Medicare Part B patients to receive IVIG infusions at home. This could be a game-changer for CIDP and MMN patients. Huge thanks to our amazing volunteers for making Hill Day a success! To read more about this event visit: https://lnkd.in/ekBPudn6

This weekend we attended the 2024 Penn Neuromuscular Symposium to honor our founding Global Medical Advisory Board member, Dr. Art Asbury. The Penn Symposium aims to provide a basic approach to patients with neuromuscular disorders and an update on novel therapeutics and future directions. Dr. Jeff Allen, our current Global Medical Advisory Board Chair, gave the first Dr. Arthur Endowment lecture on Guillain-Barré Syndrome. During his 60-year career, Dr. Asbury focused on neuromuscular conditions with a focus on Guillain-Barré. Other GMAB presenters included Dr. Karissa Gable, and Dr. Sami Khella and the symposium was hosted by GMAB member, Dr. Chafic Karam. Pictured here: Dr. Carolyn Asbury, Dr. Chafic Karam, Dr. Jeff Allen and Lisa Butler.

Throughout May, as we observe GBS/CIDP Awareness Month, we stand alongside the patient community and our esteemed patient organization partners worldwide to shine a light on these rare neurological autoimmune disorders. GBS is an acute inflammatory disorder that causes muscle weakness and sometimes paralysis. CIPD on the other hand is a chronic neurological disease in which the immune system attacks and damages the protective coating covering the nerves, causing weakness, pain, numbness, and tingling in the arms and legs, as well as loss of balance that may impair the ability to walk. It’s estimated that 450,000 people worldwide are impacted by CIDP. 👍 Join us in spreading awareness of #GBS and #CIDP by liking this post and showing your support! #cidpawarenessmonth #neurology #WhatWeDoMatters