We are sharing this research opportunity on behalf of Evidera, an independent healthcare research company, on a study examining side effects associated with steroid medications. Evidera’s team is hoping to gain more insight into these side effects and how they impact one’s quality of life by conducting one-on-one interviews with individuals with CIDP, who have…
Educational Webinar Now On-Demand! “What Happens in CIDP and How Does Immunoglobulin Treatment Work?” is now available to watch anytime on-demand. Immunoglobulin (Ig) treatments are a type of therapy that doctors use to help people with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s important for patients to know how these treatments work and to feel comfortable…
Back by popular demand, our 2024 Virtual Summit, on Friday, September 27th and Saturday, September 28th, will feature a wide range of educational panels and presentations, as recorded at the 2023 Washington, DC Patient Symposium. The Virtual Summit is a FREE and easy-access one-day event, showcasing the best practices for navigating the journey through GBS,…
Hey doc, are you sure this is CIDP? By Jeffrey A. Allen MD,University of Minnesota It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have…
Clinical research studies are scientific evaluations in people, led by researchers and physicians. They can help advance the understanding of a disease and are the most important way for researchers to find out if potential new treatments are safe and effective. Studies like these are needed to be able to make new treatments available to…
Published in The Lancet, May 7, 2019 Co-authored by Carina Bunschoten, Bart C Jacobs, Peter U K Van den Bergh, David R. Cornblath, Pieter A van Doorn
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…
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…
For Rogers, this year has been filled with pain and triumph, a year of repetitive setbacks and remarkable progress. In August 2017, Rogers was paralyzed by a rare autoimmune condition, known as CIDP. Her first steps — at first with the assist of a harness — came a month later. Read more in Chicago Tribune….
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…
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…