Foundation News

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

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 professionals, learn new patient advocacy skills (like effectively telling their…

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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 CarePartners: What? Why? How?

Self-Care for CarePartners: What? Why? How? On our website, the Foundation reminds GBS|CIDP CarePartners 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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State Advocacy Works!

State Advocacy Works! Thanks to the collective advocacy of many groups over many months, Massachusetts Governor Charlie Baker signed a bill into law that restricts the practice of Step Therapy. Step therapy is when patients are required to try using cheaper drugs in their recovery before “stepping up” to pricier meds. The new law requires…

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CIDP ARISE Clinical Trial

Have you been diagnosed with CIDP? A clinical research study (ARISE) is now enrolling to evaluate an investigational medication. Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disease where thebody’s natural defenses, like antibodies, attack the covering of the nerves, called myelin,and damage nerve function. While symptoms aren’t the same for everyone, CIDP canmake your…

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GBS CIDP Foundation International Earns Coveted 4-Star Rating From Charity Navigator

Conshohocken, PA (June 2022) – GBS|CIDP Foundation International’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.  This is the 11th consecutive time that GBS|CIDP Foundation International has earned this top distinction. Since 2002, using objective analysis, Charity Navigator has awarded only…

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August Advocacy

Every year, Congressional Members take the month of August to spend time in their State or District to learn more about the issues that matter most to the people they represent. This is a great chance to connect with the local office – every Member has at least one office in their State or District…

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Pagination