An article published in Brain Journal, September 25, 2018, regarding research findings of the International Guillain Barre Outcome Survey (IGOS), partially supported by GBS|CIDP Foundation International, received the “Editor’s Choice.” Findings of IGOS are significant to the GBS community as noted in the abstract summary of article
In 2017, a nationwide survey of US CIDP patients was conducted to assess the impact of disease-related disability and treatment on lifestyle and work activities. Approximately 3250 individuals aged ≥18 years, recruited by the GBS|CIDP Foundation and self-reported to have CIDP, were invited to complete an online survey; of these, 475 completed the survey and…
On March 4, the Fresno BEE published “Rare illness left this Clovis man paralyzed. Now he’s helping others,” featuring GBS|CIDP Foundation’s volunteer, Rob Vasquez of Clovis, CA. The Clovis Walk & Roll, March 9, hosted by Rob, is the first of the 2019 Walk & Roll season! See Fresno Bee Video and Article
Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder.
By Jeffrey A. Allen, MDMember, GBS|CIDP Foundation Global Medical Advisory Board CIDP as a named disease entity is now about 4 decades old. The laboratory data that helps define the disease, nerve conduction studies and in some cases cerebral spinal fluid and nerve biopsy, is even older; and the initial description of what has now…
Cheers to 30 Years! It was the best of all worlds this past November at the 2018 Symposium in San Diego where a record-breaking 575 attendees gathered for 3 days of GBS|CIDP patient support, education, research and advocacy! Thank you to our presenters, sponsors, volunteers and every member of this amazing community for the moments…
David Saperstein, MD Co-Director GBS/CIDP Center of Excellence Phoenix Neurological Associates Phoenix, AZ Intravenous immunoglobulin (IVIg) is one of the main therapies used to treat CIDP. This therapy can be very effective but there are drawbacks. Some people experience headaches related to the intravenous infusions. Some people have difficulty with IV access. Also, the need…
Infections and vaccines have been hypothesized to play a role in triggering the development of GBS. However, in this report, Vaccines and Guillain-Barre syndrome, it is shown that an association between vaccine administration and GBS has never been proven for most of debated vaccines, although it cannot be definitively excluded.
We are pleased to announce our 2018 Research Grant Awardees.
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.
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…
(#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…
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…
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…
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