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/
The GBS|CIDP Foundation International acknowledges the urgent need for airlines to respect and improve their treatment of people with rare conditions and their medical equipment while at airports and flying. Too often, mobility devices, wheelchairs, and other medical equipment are mishandled or damaged by airline staff due to neglectful treatment and a lack of understanding…
Sharing Patient Stories on the Hill Written by Ellie Herman, Advocacy Coordinator To kickoff this year’s 2023 International Symposium, the advocacy team brought 60 patients and care partners to Capitol Hill for a day of storytelling and advocacy with our lawmakers. Hill Day participants were divided into 11 teams and interacted with over 30 offices…
Michael was diagnosed with GBS nine and a half years ago as he was getting ready to complete his 30th full marathon. Instead of running, he stumbled into his doctor’s office and was told to go straight to the hospital. At that moment, Michael didn’t realize the events that would unfold in the 135 days…
Listed by: Interface Analysis Associates LLC Who is Eligible? About the Study Compensation – Time Commitment Interested in Participating? Contact our recruiters: About Interface Analysis Associates LLC. (IAA) IAA is a leading consumer healthcare research firm led by Dr. Anthony Andre, Ph. D, CDE. IAA has been in business for 30 years performing non-invasive simulated…
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,…
Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
UnitedHealthcare (UHC), a private insurance company that provides health insurance to more than 25 million Americans nationwide, will be dropping four immunoglobulin (Ig) products from its formulary on October 1, 2023: Asceniv, Cuvitru, Cutaquig, and Panzyga. These formulary changes will affect individual UnitedHealthcare plans (i.e., those obtained through a marketplace) except in Massachusetts, Nevada, and New York. It is…
In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…
The Coffee Chat, Tips and Tricks for Traveling, hosted by Foundation staff members Kelly McCoy and Lori Besiege, offered valuable support on how to navigate the challenges that may arise while you are on a plane, train, or bus with a neurological condition that may cause mobility issues. Whether you are traveling to our International…
ARDA Multifocal Motor Neuropathy Study The ARDA study is designed to assess the safety and effectiveness of the investigational study drug compared to a placebo for the treatment of adults living with MMN. Participants enrolled in the study will be randomly assigned by a computer to either receive the investigational drug or a placebo. Participants…
International Guillain-Barré Syndrome Outcome Study (IGOS) The international GBS Outcome Study (IGOS) is the largest and longest prospective trial designed to collect extensive data from patients afflicted with GBS in a systematic manner. The aim is to collect information from patients by intensive international collaboration. All patients are followed at standard intervals from the earliest…