Inspiring the Next Generation of Research at the GBS|CIDP Foundation International Patient Symposium
As part of the 2023 International Patient Symposium, the Foundation was thrilled to welcome seven young medical professionals – ranging from those in their residency to those finishing their Ph.D. – to join the conference and learn from our Global Medical Advisory Board and from the patient community. These young professionals attended sessions, facilitated Q&A’s,…
Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
UnitedHealthcare (UHC), a private insurance company that provides health insurance to more than 25 million Americans nationwide, will be dropping four immunoglobulin (Ig) products from its formulary on October 1, 2023: Asceniv, Cuvitru, Cutaquig, and Panzyga. These formulary changes will affect individual UnitedHealthcare plans (i.e., those obtained through a marketplace) except in Massachusetts, Nevada, and New York. It is…
In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…
The Coffee Chat, Tips and Tricks for Traveling, hosted by Foundation staff members Kelly McCoy and Lori Besiege, offered valuable support on how to navigate the challenges that may arise while you are on a plane, train, or bus with a neurological condition that may cause mobility issues. Whether you are traveling to our International…
ARDA Multifocal Motor Neuropathy Study – This study is completed and no longer recruiting patients The ARDA study is designed to assess the safety and effectiveness of the investigational study drug compared to a placebo for the treatment of adults living with MMN. Participants enrolled in the study will be randomly assigned by a computer…
International Guillain-Barré Syndrome Outcome Study (IGOS) The international GBS Outcome Study (IGOS) is the largest and longest prospective trial designed to collect extensive data from patients afflicted with GBS in a systematic manner. The aim is to collect information from patients by intensive international collaboration. All patients are followed at standard intervals from the earliest…
In July of 2023, the Foundation co-hosted an Open House with Bryn Mawr Rehabilitation Hospital in Malvern, PA. GBS and CIDP patients in attendance received a guided tour of the facility from the PT and OT’s, as well as a demonstration of adaptive devices and recreational therapies. The feedback from our community has been very…
There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play an active role in our community by raising awareness of GBS, CIDP, MMN, and the Foundation resources. Ray Lopez, Boca Raton Liaison, has made it his mission to visit local hospitals and share…
Taking Volunteering to the Next Level The Foundation volunteers are taking volunteering to a whole new level! Don’t miss a chance to tune into what our current volunteers are doing in the community. There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play…
Statement regarding GBS alert in Peru July 10, 2023 The Foundation and its Global Medical Advisory Board are aware that Peru has issued a statement of emergency due to an increase in cases of Guillain Barre Syndrome. Please know we are here for you and the GBS|CIDP Foundation International is committed to addressing your concerns…
The Peripheral Nerve Society (PNS) is an international non-profit organization of scientists, physicians, and other healthcare providers working together to investigate and treat diseases of the peripheral nervous system. An Honorary INC Plenary Lecture Award was given to the GBS|CIDP Foundation by the Inflammatory Neuropathy Consortium at the PNS conference in Copenhagen. Peripheral Nerve Society…
Rick Forney, the Mid-Atlantic Regional Director for the Roanoke Chapter and GBS patient, hosted a chapter meeting during May Awareness Month, which brought together several patients and care partners. This support meeting was featured in the WFXR Fox news article called, “A community finding comfort living with a rare disorder.”
Crystal Sada, CIDP Patient, was featured on iHeart Radio, Untold Stories: Life with Myasthenia Gravis, The Realities of Life with CIDP and share how her life has been drastically impacted by this rare condition.
Clive Phillips, MMN Patient, created the Making the Most of Now Podcast to bring together the Multifocal Motor Neuropathy (MMN) community to discuss this rare neurological condition and related ones. He connects with medical experts, patients, and their supporters to inform and inspire our community.
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