Foundation News

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!…

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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…

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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…

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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/

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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…

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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,…

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[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….

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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,…

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Takeda Receives Positive CHMP Opinion for HYQVIA® as Maintenance Therapy in Patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

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/

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CIDP Clinical Trial

A Phase 2b, Multi-center, Randomized, Quadruple-blind, Placebo-controlled Study of Batoclimab Treatment in Adult Participants With Active Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) sponsored by IMMUNOVANT The IMVT-1401-2401 study wants to learn more about the safety and effectiveness of an investigational drug called batoclimab to see if it could help CIDP patients manage their symptoms. Batoclimab is given by a simple…

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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…

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2023 Symposium Hill Day

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…

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