“For nearly 30 years there has been quite literally no advancement in treatments for GBS. This research update, including the participation of two of the founding fathers of our global medical advisor board, offers incredible promise and hope for the GBS community.” –Lisa Butler, Executive Director, GBS|CIDP Foundation International Check back often as we will…
Inspiring stories of resilience remind us of the human spirit’s strength. One such story is that of a Brooklyn man, Michael Ring, diagnosed with GBS who defied the odds to return to his passion for running. Michael was featured on News 12 The Bronx, showcasing his incredible journey from the early stages of his diagnosis…
Early Detection and Diagnosis of CIDP Discover firsthand insights from CIDP patient and Foundation staff Kelly McCoy, alongside GMAB members Chafic Karam, MD and Jeff Allen, MD, as they share their experiences in this informative article. Early detection is crucial in managing CIDP, and their stories shed light on the importance of timely diagnosis. Let’s…
Navigating Financial Assistance and Insurance: Your Comprehensive Guide Managing the financial aspects of chronic conditions like Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) can be overwhelming. Our Financial Assistance and Insurance Resources portal at the GBS|CIDP Foundation International offers invaluable guidance to navigate this complex landscape with confidence. Understanding Your Coverage: Our portal…
We are honored to announce the first annual Dr. Arthur Asbury Endowment Lecture, sponsored by the GBS|CIDP Foundation International. This first lecture regarding the rare neuromuscular conditions of GBS, CIDP and MMN, will be presented by Dr. Jeffrey Allen of the University of Minnesota, on Saturday, May 18, 2024 at the Penn Neuromuscular Symposium, Perelman…
In 2022, the Foundation embarked on fundraising endeavors aimed at research dedicated to advancing treatments and diagnostics for Multifocal Motor Neuropathy (MMN). We extend our heartfelt gratitude to our community for their unwavering support and contributions during MMN Awareness Month this February. Thanks to these collective efforts, and to the innovative research being conducted in…
Applying for Social Security Disability Insurance Written by: Amy Stein, MSW, LCSW, Health Navigator During my years of working as a social worker in hospitals, a common question among my patients was “should I apply for disability?” There is no “one answer fits all” reply to this question. Did the patient mean a disability policy…
Executive Director, Lisa Butler discusses legislation, for patients on Medicare, with NHC. Full article here: https://nationalhealthcouncil.org/blog/guest-post-legislation-needed-to-improve-access-to-vital-treatment-for-medicare-rare-disease-patients/
As Rare Disease Day is approaching, CSL Behring is in touch with leaders of patient advocacy groups to explain why rare conditions deserve attention and recognition as a global health concern. Click here to read what Lisa Butler, the Executive Director of GBS|CIDP Foundation, and other nonprofits have to say. Having any disease can be…
Brenda Perales is a patient of Multifocal Motor Neuropathy (MMN) and has been associated with the MMN community and Foundation for several years. During her journey with MMN, she always felt stressed whenever she had to walk alone for more than 100 feet. This was true whether she was walking through the halls of the…
A Practical Guide to Identify Patients With Multifocal Motor Neuropathy, a Treatable Immune-Mediated Neuropathy Click here to view the article Published by PubMed on January 8, 2024.
FDA has approved both Takeda’s HYQVIA, a new maintenance therapy for patients with CIDP, and GAMMAGARD LIQUID®. The Foundation advocates for access to all products at all points of care. As always, the Foundation recommends consulting with your physician when exploring new treatment options. More information at our HYQVIA Treatment and Access Page: https://www.gbs-cidp.org/treatments-access/takeda/ Approval…
Palmetto Infusion Patient Advocate Chrissie Jenkins, LISW-CP, and Medicare Benefits Counselor and Pharmacist Jerilyn Arneson, PharmD, BCOP break down the complexities of Medicare options in this webinar, offering essential tips and tools specifically tailored for those undergoing infusion or specialty therapy treatments.
TAKEDA receives positive CHMP opinion for HYQVIA® as maintenance therapy in patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a positive opinion for HYQVIA® as a maintenance therapy for patients with chronic inflammatory demyelinating polyneuropathy (CIDP). Please find the press release here: https://www.takeda.com/newsroom/newsreleases/2023/Takeda-Receives-Positive-CHMP-Opinion-for-HYQVIA-as-Maintenance-Therapy-in-Patients-with-Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP/
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,…
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