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…
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.
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,…
[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….
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,…
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…
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…
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,…
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…
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…
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…
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…
Rare Disease Day 2023
How are you raising awareness for the rare community… this Rare Disease Day? (February 28, 2023) About Rare Disease Day Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is the 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…
New Center of Excellence in Denton, Texas
New Center of Excellence in Denton, Texas Our Global Medical Advisory Board has set standards for what they consider to be excellent medical centers for the diagnosis and treatment of GBS and CIDP, MMN and related neuropathies. Based on levels of expertise, available treatments, facilities, and research capabilities, the COE’s are the medical centers that…