GBS is a rare immune disorder that damages peripheral nerves (that is, nerves outside of the brain and spinal cord). In most people GBS is triggered by exposure to an infectious illness, and the most frequently encountered infectious illness is a gastrointestinal infection known as Campylobacter jejuni. Campylobacter jejuni is commonly transmitted through food, particularly undercooked poultry…
Andrew Harris, a GBS survivor, has combined his passion for beer with a desire to assist others facing the challenges of GBS to make a successful fundraiser at Mast Landing Brewery in Maine. Moved by Andrew’s courageous battle, Mast Landing Brewery crafted a signature beer in his honor, symbolizing solidarity and support for individuals affected…
Strength to Move Forward: Drake’s CIDP Experience and an Overview of an IVIg Treatment Option for Adults with CIDP This program is sponsored by Pfizer, Inc. Now Available to Watch on Demand Join Lisa Butler from the GBS|CIDP Foundation International, a neurologist, and a person living with CIDP for the online educational presentation, “Strength to…
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…
New England Disabled Sports (NEDS) is a nonprofit organization based in New Hampshire. They provide expert adaptive sports instruction to adults and children with physical and cognitive disabilities. NEDS aims to ensure that every individual, regardless of their ability, has the opportunity to participate in sports and recreation activities. For more information visit https://nedisabledsports.org/about-neds/
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.
Now Available on Demand Join a neurologist, patient advocate and person with MMN for our on-demand webinar: Living With Multifocal Motor Neuropathy? Why Your Participation in Trials Matters! You will learn how observational, investigational, and clinical trials can benefit people with MMN. Plus, you will find out how you can enroll in specific ongoing trials….
New International Affairs Director Please join us in welcoming Nancy Di Salvo to the GBS|CIDP Staff as our new International Affairs Director! A tireless international volunteer for the GBS|CIDP community since 2013 and a Board Member since 2019, Nancy has educated and supported numerous patients worldwide. We look forward to having Nancy join our staff,…
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/
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