Speaker Series – Episode 10 Summary In this Speaker Series episode, we talked with Dr. Stojan Peric, a researcher and professor, at the University of Belgrade in Serbia and a neurologist at the Clinical Center of Serbia. Catch up on the conversation with Dr. Peric and learn what fatigue is, how it is triggered, and…
Educational Webinar Now On-Demand! “What Happens in CIDP and How Does Immunoglobulin Treatment Work?” is now available to watch anytime on-demand. Immunoglobulin (Ig) treatments are a type of therapy that doctors use to help people with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s important for patients to know how these treatments work and to feel comfortable…
This statement is provided by the GBS|CIDP Foundation Global Medical Advisory Board. We also encourage you to contact your healthcare provider about whether it would be a good idea for you to have a COVID-19 vaccine. There has been much discussion about COVID-19 vaccines for individuals who are “immunocompromised.” GBS and CIDP and immune-mediated disorders….
CIDP Assistance Funds – Now Open for Enrollment! The GBS|CIDP Foundation International is excited to announce funding opportunities for individuals living with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). A special thanks to the generous supporters of these funds. If you’re interested, please review the eligibility criteria below. We encourage you to apply even if these programs…
Speaker Series – Episode 9 Summary In this episode of our Speaker Series, expert storytellers from Change for Balance gave our patient community tips and tricks to become powerful storytellers. Change for Balance is a strategic communications and production agency with a mission to help change the world. The Change for Balance team is made…
This prospective longitudinal study will follow participants with Multifocal Motor Neuropathy over time and collect data on their clinical outcomes, quality of life, and use of health care resources. Participants will follow their regular visit schedule with their treating physician, except for an optional second visit occurring 7 to 14 days after the start of the study to collect biomarker data. No investigational medical product will be administered.
On June 5th, 2024, the GBS|CIDP Foundation International organized a patient-led listening session on Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). With attendance from the National Institute of Health (NIH) and 23 FDA offices, panelists were at the heart of the meeting to express various aspects of life with CIDP, including: For more information on the Patient…
An Interview with Ralph G. Neas, GBS and CIDP Written by: Ellie Herman, Advocacy Coordinator Thirty-Four years ago, the Americans with Disabilities Act (ADA) was signed into law. We decided to celebrate the anniversary of this monumental piece of legislation by sitting down with Ralph G. Neas, a key civil rights leader in Washington, who…
Speaker Series – Episode 8 Summary In this episode of our Speaker Series, we talked with Phil Goglas about the status of our HR 5818 Bill, advocacy strategies, and more! Phil Goglas is a managing partner at the Health and Medical Counsel in Washington, DC, a government relations firm that provides access and guidance to…
Back by popular demand, our 2024 Virtual Summit, on Friday, September 27th and Saturday, September 28th, will feature a wide range of educational panels and presentations, as recorded at the 2023 Washington, DC Patient Symposium. The Virtual Summit is a FREE and easy-access one-day event, showcasing the best practices for navigating the journey through GBS,…
Senators Mark Kelly (D-AZ) and Thom Tillis (R-NC) introduced the bipartisan Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act, legislation to ensure individuals with rare diseases and immunodeficiencies have access to necessary plasma-based medicines. “The GBS|CIDP Foundation International proudly supports the PLASMA Act and all policies that promote patient access to plasma medicines. Many…
We are excited to invite you to participate in an important health-related online survey about your MMN! Your insights are crucial in shaping our understanding and initiatives. Please take a moment to share your valuable experiences. For those who qualify, the survey should take about 10 minutes to complete. Click the link below to get…
Submitted by Dr. Gareth Parry, Global Medical Advisory Board Member and GBS Support Group NZ Trust An online activity-focused coaching programme helps reduce fatigue in people after Guillain-Barré Syndrome 60-80% of people with Guillain-Barré Syndrome (GBS) report persistent fatigue which significantly limits everyday functioning despite good recovery of strength. Dr Suzie Mudge who is a…
Development of a major histocompatibility complex class II conditional knockout mouse to study cell-specific and time-dependent adaptive immune responses in peripheral nerves Published by: Eroboghene E. Ubogu MD, Jeremy A. Conner BS, Yimin Wang PhD, Dinesh Yadav PhD, Thomas L. Saunders PhD Read the research article here: https://onlinelibrary.wiley.com/doi/10.1002/mus.28193
Multifocal Motor Neuropathy (MMN) Patient Assistance Program NORD’s Multifocal Motor Neuropathy Patient Assistance Program offers eligible individuals diagnosed with MMN financial support to pay for out-of-pocket healthcare costs directly related to the care and treatment of this diagnosis. Contact info for NORD’s MMN Program: Phone: 203-263-9484 Email: MMN@rarediseases.org The quickest way to apply is on…