Founder Estelle Benson Named 2018 NORD Honoree for Abbey S. Meyers Leadership Award
The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards.
FDA approves CSL Behring treatment for CIDP
The Food and Drug Administration granted marketing clearance Friday for Hizentra, a treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) developed by CSL Behring. Lisa Butler, executive director of the GBS/CIDP Foundation International, said “The approval of Hizentra offers patients who were once burdened by traveling to the infusion center or hospital the flexibility to self-administer their treatment at…
Where Do Walk Donations Go? Research!
The GBS|CIDP Walk & Roll program is a great opportunity to raise awareness, build a local support network, and get involved with GBS|CIDP community. This year we are pleased to announce that funds raised through the Walk & Roll program will be used to support research studies focused on the treatment and diagnosis for GBS|CIDP…
Clovis Walk & Roll Breaks Record!
The GBS|CIDP Foundation International is delighted to share this important Walk & Roll update! On March 10 at Dry Creek Park in Clovis, California, GBS volunteer and Clovis Walk Chairman, Robert Vasquez hosted an exciting Walk & Roll fundraising event with a record-breaking 300 walkers in attendance! Thus far the event has raised over $6,500 (and counting) to support…
May is GBS|CIDP Awareness Month – Honor Your Hero!
Honor Your Hero this MAY for GBS|CIDP Awareness Month 30,000 MEMBERS = 30,000 HEROIC STORIES TO TELL Whether you are a caregiver, friend, family member or patient, this May, GBS|CIDP Awareness month, we are asking that you send us your “Honor Your Hero” story to be shared with our community, and far beyond. Sharing your…
2017 GBS|CIDP Foundation Grant Awardees
(#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets Investigator: Gang Zhang, M.D; Ph.D Assistant Professor of Neurology University of Texas, Health Sciences Center at Houston Synopsis: Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply shortages, and multiple side effects…
Research Published on Quality of Life in Inflammatory Neuropathies: the IN-Qol
In 2008 the GBS|CIDP Foundation awarded a $60,000 to Ingemar S. J. Merkies, MD, PHD Universiteit Maastricht(The Netherlands), Professor Pieter A. van Doorn (GMAB member) Erasmus MC (The Netherlands) and Richard A. Lewis, MD (GMAB member), Cedars Sinai, for their study in Peripheral Neuropathy Outcome Measures Standardisation (PeriNomS). On February 20, 2018 a paper was…
Hansa Medical receives FDA Orphan Drug Designation for IdeS and the treatment of Guillain-Barré syndrome
February 16, 2018 Hansa Medical today announced that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation (ODD) to IdeS (INN: Imlifidase) for the treatment of Guillain-Barré syndrome (GBS). Hansa Medical, a Swedish company, is developing a drug, IdeS, which inactivates IgG. This inactivation would be like an instant plasmapheresis treatment. In…
2018 Symposium Update – Keynote Speakers Announced!
Richard A. Lewis, MD Please join us in welcoming our 2018 Symposium Keynote Speaker, Richard A. Lewis, MD, Professor of Neurology at Cedars-Sinai Medical Center, Los Angeles, CA. Dr. Lewis’ research interests include electrodiagnostic findings in demyelinating neuropathies—both acquired and inherited. As a leader in the GBS|CIDP community, he has participated in numerous patient support…
GBS|CIDP Foundation Launches Rare Disease Day Campaign
Teach One. Be One. Be a Champion for Rare Disease. February 28, 2018 will be the eleventh international Rare Disease Day. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. This year the GBS|CIDP Foundation is encouraging you to join the cause and TEACH someone about GBS,…
Interlaken Leadership Awards
The Interlaken Leadership Awards support original research in the field of neuroimmunology. Investigators whose proposals are approved by the review committee will receive monetary grants and/or drug supply. The size of the individual grants is not predetermined, in order to accommodate a wide variety of investigator needs. However small innovative trials and pilot studies may…
GBS|CIDP Foundation International Named 4-Star Charity Navigator Charity for Sixth Consecutive Year!
Dear Lisa Butler: On behalf of Charity Navigator, I wish to congratulate GBS|CIDP Foundation International on attaining the coveted4-star rating for demonstrating strong financial health and commitment to accountability and transparency. The nonprofit sector is advancing and expanding. As our organizations evolve, so do the desires and interests of our…
Towards an affordable treatment of GBS for patients from low-income countries
Guillain-Barré syndrome (GBS) takes its toll on the resource poor developing countries where the incidence of GBS is several fold higher than that of Europe and North America. In Bangladesh, 15% of patients with GBS die and 20% remain unable to walk. The poor outcome of GBS in these countries is explained predominantly by the…
A dose-response trial of IV immunoglobulin in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)/DRIP study
K. Kuitwaard1,2, E Brusse1, A.F.J.E. Vrancken4, F. Eftimov5, N.C. Notermans4, A.J. van der Kooi5, I.S.J. Merkies6,7, B.C. Jacobs1,3, P.A. van Doorn1 1Department of Neurology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands 2Department of Neurology, Albert Schweitzer Hospital, Dordrecht, The Netherlands 3Department of Immunology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands 4Department of Neurology,…
The PATH Study
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Treatment With Subcutaneous Immunoglobulin (IgPro20) The PATH Study was a trial that investigated immunoglobulin treatment infused with a pump into the tissue under the skin (subcutaneously). There are several advantage of subcutaneous over intravenous treatment, e.g. patients or their caregivers can treat themselves at home, there are less severe…