First Annual Dr. Arthur Asbury Endowment Lecture
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…
Statement from GMAB, GBS in Mexico.
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, GBS survivor, creates fundraising event in Maine
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…
2024 MMN Research Grant Announcement
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
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…
Rare Disease Day 2024
Rare Disease Day: February 29, 2024 About Rare Disease Day Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is a patient-led international awareness campaign that brings people together in solidarity with the 300 million patients impacted by rare diseases worldwide. In 2009, Rare Disease Day became a global event when The National Organization for Rare Disorders (NORD) officially sponsored the celebration in the United States. GET INVOLVED!…
Executive Director, Lisa Butler discusses legislation, for patients on Medicare, with NHC
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/
Why Rare Conditions Deserve Attention and Recognition as a Global Health Concern
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, Making the Most of Now with her Rollator
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 – Adaptive Sports Opportunity
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
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 New Treatment Options for CIDP Patients
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…
CIDP Education Session – Now Available On Demand
Diagnosed with CIDP: Shared Decision-Making Approach to Care and a Treatment Option for Adults Join us for an enlightening online presentation on Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) now available to watch on demand. Lisa Butler, Executive Director of the GBS|CIDP Foundation International, moderates this panel discussion featuring 2 doctors with expertise in CIDP and Jon,…
Breaking Down Barriers: Medicare Options for Infusion and Specialty Therapies
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.
[On Demand Webinar] Living With Multifocal Motor Neuropathy (MMN)? Why Your Participation in Trials Matters!
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….