Foundation News

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…

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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…

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Pamela Franks Transitions to New Role at the Foundation

Pamela Franks Transitions to New Role at the Foundation Please join us in congratulating Pamela Franks, as she transitions from Foundation Walk & Roll Manager to her new role as Manager of Volunteer Engagement.  Through the challenges of the past 3 years, Pamela has played a critical role in our Walk & Roll program, enthusiastically…

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Children with rapid-onset paralysis: is it GBS?

Children with rapid-onset paralysis: is it GBS? by Patricia Blomkwist An interesting article* was published in the “European Journal of Neurology” about a study in children. Prof. Bart Jacobs (Erasmus Medical Center, Rotterdam, The Netherlands) was one of the authors. He wondered why, contrary to expectations, some children diagnosed with GBS did not recover well….

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From Diagnosis to Treatment: Patient-centered Care with the New CIDP Guidelines

From Diagnosis to Treatment: Patient-centered Care with the New CIDP Guidelines Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is frequently misdiagnosed as other neurological conditions. New guidelines were recently released to help clinicians identify symptoms earlier and provide the best course of treatment. We invite you to join an expert panel of neurologists and representatives from the…

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Propionate Exerts Neuroprotective and Neuroregenerative Effects in the Peripheral Nervous System

Propionate Exerts Neuroprotective and Neuroregenerative Effects in the Peripheral Nervous System A  recent study from Ruhr-University Bochum, Germany, was able to demonstrate that the short-chain fatty acid, propionate, has a protective and regenerative effect on the peripheral nervous system in cell culture and in animal experiments. Dr. Thomas Grüter who headed the cell culture and…

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2023 International Regional Meetings

2023 Barcelona, Vienna, and Copenhagen Regional Meetings Join us this March for an EU Regional Meeting Near you! Have you, or a loved one, recently been diagnosed with Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) or Multifocal Motor Neuropathy (MMN)? Or, perhaps you have been coping for some time but would like more information…

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Discussion on Healthy Lifestyle and a Treatment Option for Adults with CIDP

Strength to Move Forward – Discussion on Healthy Lifestyle and a Treatment Option for Adults with CIDP Sponsored by Pfizer Inc. Available on Demand – Full Program Strength to Move Forward – Discussion on Healthy Lifestyle and a Treatment Option for Adults with CIDP, an educational event produced by the GBS|CIDP Foundation International in collaboration…

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You Have CIDP…Now What?

You Have CIDP…Now What? Join GBS|CIDP and NeuroCareLive for a new online patient education: “You Have CIDP…Now What?”  A panel of CIDP experts and patients discuss CIDP symptoms, tests used to confirm diagnoses, best practices to select treatment, and tips on how to talk with doctors about your care. Panelists explain current treatment options for…

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National Health Council Board of Directors

Congratulations Lisa! On December 6, 2022, Executive Director, Lisa Butler was elected to the National Health Council Board of Directors. Congratulations Lisa! She is pictured here with incoming Chairman of the NHC Board, Kenneth Mendez.

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It’s a wrap for 50 to Forward Advocacy Training 2022

It’s a wrap for 50 to Forward Advocacy Training 2022 In 2022, each month, a group of loyal advocates gathered together for an online, interactive, training series.  The monthly sessions were an opportunity for advocates to stay informed of the latest news on H.R. 3808 legislation, network with a team of patients, caregivers and legislation…

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Patient and Caregiver Preferences on CIDP Treatment

Patient and Caregiver Preferences on CIDP Treatment A research team is looking for patients and their caregivers to participate in an online survey about experiences with CIDP and preferences for CIDP treatments. Your perspectives will help improve the understanding of patients’ and caregivers’ preferences and inform the development of future potential CIDP treatments. If you…

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CIDP Patient Perspectives on IG Treatment

CIDP Patient Perspectives on IG Treatment A research team is looking for participants for a market research study on treatments for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). If you currently receive immunoglobulin (or Ig) therapy for CIDP, you might be a good fit for this study. Help others with CIDP by participating in this important research….

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Adaptive Devices, New Patient-Reported Product List

Adaptive Devices, New Patient-Reported Product List LIFE with Peripheral Neuropathy just got a little easier… Our Adaptive devices table at this year’s Symposium was a huge hit, thanks to the great efforts of  volunteers Julie Bell and Emma Bao! But it doesn’t end there, we have published a list of unique items that are used to…

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Self-Care for Caregivers: What? Why? How?

Self-Care for Caregivers: What? Why? How? On our website, the Foundation reminds GBS|CIDP caregivers that no one can prepare you for the challenges you will face.  Though this journey is stressful, there are things you can do to help you manage.  One of the most important is taking care of yourself.  What is self-care?  …

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Pagination