GBS-CIDP Foundation International

07/25/2025

"My GBS journey was filled with physical pain, emotional distress, and mental exhaustion. I had to relearn everything—from sitting up
to walking. But through it all, I found strength in my faith, my family, friends, my church, and the incredible healthcare professionals
who stood by me.

During this period, I learned to appreciate the power of community. My support system became my lifeline. Their visits, prayers, words of encouragement, and constant check-ins reminded me that I was not alone. Each day brought small victories—moving a finger, sitting unaided, taking a few steps—and we celebrated them all."

📘Continue reading: https://www.gbs-cidp.org/patient-stories/violet-nelly/

07/25/2025

The GBS|CIDP Foundation International and the European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN) are proud to announce the Principles of Care (PoC) initiative, a four-year European project designed to transform the future of CIDP care.

Principles of Care The Problem: A Patchwork of Care for a Complex Disease Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare and complex neurological disorder that affects patients in Europe and across the globe. However, despite medical advancements, far too many individuals with CI...

07/21/2025

What a great turnout at Saturday’s Philadelphia Chapter Meeting!
We’re so grateful to Penn Medicine for generously providing such a welcoming and beautiful space. Events like these bring us one step closer to fulfilling our mission: no one walks this journey alone. 💙

07/16/2025

Calling all Michigan patients and caregivers!

Join us for a FREE GBS|CIDP Community Day on Saturday, August 16, 2025 at the Henry Ford Medical Center from 8AM–12PM.

Hear from leading experts, including Dr. Sachdev (GBS) and Dr. Jowkar (CIDP), and get practical guidance on adaptive devices, insurance support, and more.
Whether you're newly diagnosed or years into your journey, this day is designed to educate, connect, and empower.

👉 Register now! https://p2p.onecause.com/communitydays/event/michigan

07/14/2025

We are thrilled to announce that we’ve received over 50 submissions encompassing over 150 offices for our Grassroots Letter Writing Program!

Letter writing is one of the most important ways of pushing change on a large scale and helping changemakers understand the important work of our patient community and Foundation at large. We are so excited to have this opportunity to demonstrate the breadth and diversity of patient experiences and use them to facilitate greater access to resources for patients who need them, and research on the conditions we serve.

For those already on our email list, the link to the form will be in your inbox, and we will be sending out future opportunities later this year for those who have yet to receive it.

07/09/2025

We’re still feeling the love from our Philly Walk & Roll last week! 💙
We’re excited to reshare some of the incredible moments from the day — from uplifting connections to shared laughter and meaningful strides in support of our community.

Swipe through, tag your friends, and relive the memories with us!

07/02/2025

Takeda has announced FDA approval of GAMMAGARD LIQUID ERC, the first and only ready-to-use liquid immunoglobulin therapy with low Immunoglobulin A (IgA).

To learn more about this product visit:

Takeda’s GAMMAGARD LIQUID ERC, a low IgA immunoglobulin therapy, receives FDA approval as a ready-to-use treatment for primary immunodeficiency in patients aged two and older.

07/02/2025

We at the GBS | CIDP Foundation International share the concerns of our partners at the National Organization for Rare Disorders and are happy to join the Rare Disease Community’s efforts to protect essential healthcare services for patients and families. Please consider taking the steps below to contact your representative and urge them to stand with the Rare Disease Community.

Today, the U.S. Senate passed legislation that, if signed into law, would impose dramatic and harmful barriers to , threatening access to quality, affordable health care for the rare disease patients who need it most. The fight isn’t over, and we urgently need your help!

TAKE ACTION TODAY and urge your Representatives in the House to reject the Senate-passed bill:

1. Call the Capitol Switchboard at (202) 224-3121 and request to be connected with your Representative’s office. We prepared this quick script to help guide your conversation: https://bit.ly/4k8Wsro

2. Send this action alert urging your Representative to stand with the rare disease community and protect Medicaid: https://bit.ly/41uFH3W

06/28/2025

We were beyond honored to have 6abc Action News join us at this year’s Philly Walk & Roll! 💙🎉 Their coverage not only helps raise crucial awareness for GBS, CIDP and MMN, but also shines a spotlight on what truly makes this event so powerful—our incredible community.

Every story shared is a testament to the strength, resilience, and unity of the families and individuals we walk beside. Thank you to everyone who showed up, supported, and made this event unforgettable. And thank you to 6abc for helping spread our mission!

06/27/2025

Hear directly from Clive Phillips, MMN patient, as he talks about his Making The Most of Now team's journey through the Tour de MMN!

During our rest day in Avignon Clive Phillips sat down with Chris Sidwells of Cycling Legends Media to talk all things Tour de MMN and Multifocal Motor Neuropathy for the Cycling Legends Podcast.

You can listen to the episode now😀

https://shows.acast.com/cycling-legends/episodes/interview-clive-phillips-making-the-most-of-now

06/26/2025

Knowledge is power — especially when it comes to treating rare conditions like GBS and CIDP. Take time to learn about treatment options and how YOU can advocate for better care.

Explore treatments and access issues here:
🔗 gbs-cidp.org/treatments-access

06/25/2025

Thank you to Deutsche GBS CIDP Selbsthilfe e.V. in Germany for including Italy's first International Walk & Roll event in their recent newsletter.

We appreciate the opportunity to share this awareness initiative with the broader GBS, CIDP, and MMN communities. Building global connections like this helps us move closer to our mission of supporting patients and raising awareness worldwide.

Find the article here: https://gbs-selbsthilfe.org/informationsmaterial/ -journal