New York City Patient Meet-Up Wonderful patient and caregiver support meeting in New York City this month! A huge thank you to our dedicated volunteer, Edward Gent, MMN patient, for his hard work in creating a meaningful day of connection and community. We are also deeply grateful to Dr. Brannagan, Dr. Lange, and Dr. Rosenthal for their time…
Your Voice Matters- Take part in our research! If you have chronic inflammatory demyelinating polyneuropathy (CIDP), you may be eligible to take part in our interview. RTI Health Solutions (RTI-HS), a non-profit research organization, is recruiting people to participate in an interview to help researchers understand the aspects of treatment that matter to patients with…
Study on the Economic Impacts of GBS Magnolia Innovation, an independent research company, is seeking individuals and care partners for individuals who have been diagnosed with Guillain-Barre syndrome (GBS) to participate in a web survey to share their personal experiences with GBS. WE WOULD LOVE TO HEAR FROM YOU IF: If you are interested, please…
In this episode, we explore the complex journey of living with GBS, CIDP, or MMN alongside other autoimmune conditions. In our Speaker Series webinar featuring Dr. Maureen Su, she breaks down how the immune system functions, what happens when it goes off track, and why some individuals develop multiple autoimmune diagnoses. Dr. Su also shares…
Principles of Care The Problem: A Patchwork of Care for a Complex Disease Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare and complex neurological disorder that affects patients in Europe and across the globe. However, despite medical advancements, far too many individuals with CIDP experience long, uncertain diagnostic journeys, inconsistent treatment approaches, and fragmented care….
On June 30, 2025, Takeda announced that the U.S. Food and Drug Administration approved GAMMAGARD LIQUID ERC, a 10% ready-to-use liquid immunoglobulin therapy. The product is indicated as a replacement therapy for individuals aged two and older with primary immunodeficiency, and it can be administered either intravenously or subcutaneously. Because it’s ready-to-use, it removes the…
Claire Bergstrom Johnson My decision to apply for the Benson Fellowship stems from my commitment to advancing our understanding and treatment of inflammatory neuropathies. As a Clarendon Scholar nearing completion of my DPhil in Clinical Neurosciences at the University of Oxford, a significant achievement of my doctoral research has beenthe identification of unmutated autoreactive B…
We are proud to share that Nancy DiSalvo, Director of International Affairs at the GBS|CIDP Foundation International, was recently interviewed in Rarity Life magazine, a publication dedicated to elevating the voices of the rare disease community. Her interview, featured in the article “The Importance of Connection,” beautifully reflects the Foundation’s core belief: no one facing GBS, CIDP,…
CAPTIVATE: A Clinical Trial for Patients with CIDP What is this trial about? The CAPTIVATE study is testing a new medicine called DNTH103 to see if it can help people with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). What is CIDP? CIDP is a rare condition where your body’s defense system (immune system) mistakenly attacks the protective…
Do you have Multifocal Motor Neuropathy (MMN)? Clinical Outcomes Solutions, a healthcare research company, is conducting research about the experience of living with MMN. We are looking for adults with MMN to help fine-tune an MMN-specific patient reported outcome measure (PRO) that can be used in clinical trials and clinical settings. The newly designed PRO…
Every May, the senior class at Germantown Academy is sent off to participate in what is known as “Senior Project”. Each student does something different related to a certain interest of theirs. Each student has a “host” they shadow like a doctor, lawyer, or teacher. I have always been interested in the inner workings of nonprofit organizations. My…
This week, the GBS|CIDP Foundation International is proudly represented in Mexico City as we continue our mission to raise global awareness and support for those affected by GBS, CIDP, and related conditions. Our Chief Strategy Officer, Richard, and dedicated Board Member, Valentina, are attending the Solane Conference, connecting with international medical leaders and patient advocates…
On May 8th, the GBS|CIDP Foundation International proudly hosted our annual Hill Day, bringing together more than 20 passionate patients and advocates from across the country to empower their voices in support of the Medicare IVIG Access Enhancement Act. This vital piece of legislation would expand Medicare Part B coverage for in-home IVIG treatments for…
On May 22nd, the GBS|CIDP Foundation International hosted a heartfelt and informative Neuro Nurse Coffee Chat, bringing together our community of neurology nurses and infusion nurses for a warm and welcoming virtual gathering. From seasoned neuro nurses to those newer to the field, participants shared experiences, asked questions, and found solidarity in their dedication to…
In a powerful full-circle moment, a CIDP patient and dedicated GBS|CIDP Foundation volunteer, Amanda, returned to Mount Sinai Hospital in New York City—not as a patient this time, but as an advocate. She attended the annual Mount Sinai Spinal Cord Injury (SCI) Research Fair to raise awareness about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and to…
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