Topics of Interest

A Capitol Hill Kick-Off for GBS|CIDP Awareness Month

2024 Hill Day Written by Ellie Herman, Advocacy Coordinator  To kick off the first day of GBS|CIDP Awareness month, the Foundation went to Capitol Hill with over 30 volunteers consisting of patients, care partners, health care professionals, and many of our staff. Prior to Hill Day, volunteers participated in a compelling storytelling webinar series to…

Read More

GBS|CIDP Foundation Announces Philadelphia Skyline to Illuminate Blue and Green in Honor of GBS|CIDP Awareness Month

GBS|CIDP Foundation Announces Philadelphia Skyline to Illuminate Blue and Green in Honor of GBS|CIDP Awareness Month The GBS|CIDP Foundation International proudly announces that the Philadelphia skyline will be illuminated in blue and green on May 21st in honor of GBS|CIDP Awareness Month. The buildings participating are: Subaru of America, Peco, Cira Center, and 1735 Market. The…

Read More

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…

Read More

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,…

Read More

[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….

Read More

Foundation Welcomes New International Affairs Director

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,…

Read More

Call on Airlines to Respect People with Rare Conditions and their Medical Equipment

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…

Read More

GBS Patient Completes his 7th Marathon

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…

Read More

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,…

Read More

UnitedHealthcare dropping four immunoglobulin products from formulary

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…

Read More

Volunteer spreads awareness in local hospitals

There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play an active role in our community by raising awareness of GBS, CIDP, MMN, and the Foundation resources. Ray Lopez, Boca Raton Liaison, has made it his mission to visit local hospitals and share…

Read More

Honorary INC Plenary Lecture Awarded to GBS|CIDP Foundation International

The Peripheral Nerve Society (PNS) is an international non-profit organization of scientists, physicians, and other healthcare providers working together to investigate and treat diseases of the peripheral nervous system. An Honorary INC Plenary Lecture Award was given to the GBS|CIDP Foundation by the Inflammatory Neuropathy Consortium at the PNS conference in Copenhagen. Peripheral Nerve Society…

Read More

Dr. Jeffrey Allen, New Global Medical Board Chairman

Please join us as we recognize Dr. Peter Donofrio, MD for all of his hard work and dedication as chairman of our Global Medical Advisory Board. As Peter steps down, we welcome Dr. Jeffrey Allen, MD as the new Chairman. Congratulations Jeff! We are honored to have your leadership and vision! Jeffrey Allen, MD is an Associate Professor in the Department of Neurology…

Read More