The Foundation is committed sharing the most accurate information from the world’s leading experts, many from our Global Medical Advisory Board. The COVID-19 situation changes daily and we will continue to share updates that are vetted by the experts in GBS. In addition we are in regular contact with the FDA representing the patient voice in the top-level decision making. We understand that there are many opinions creating confusion so please consider the source of your information before drawing conclusions. As always, all decisions should be made with your personal physician based on your own health. Please continue to check our website for updated information.
By Lisa Butler In 2020 as the Foundation worked with the FDA, for the first time, what I feel is most notable – and praiseworthy – is their straightforward adherence to science, and their tremendous efforts to bring the patient perspective into the decision-making process. I feel even more confident in the leadership of the…
In reaction to recent research published in Brain (click here to read more), Professor Lunn has offered this guidance in regards to our community.
A UK based epidemiological study, linked below, has found no causal association between COVID-19 infection and Guillain-Barré syndrome. This means that GBS developing at the same time or close to that of COVID-19 is most likely coincidental.
The American Plasma Users Coalition (APLUS) recognizes and applauds the recent statements from the White House that emphasize the importance of plasma and how essential plasma donors are to the healthcare system. This statement rings true for convalescent plasma that may help countless patients battling COVID-19 and is especially true for people all over the…
Our 2020 May Awareness Month went digital this year, but that did not stop nearly 100 advocates across the US from participating in virtual advocacy through the Advocacy Action Center. THANK YOU to everyone who took the time to create a letter for Members of Congress. Together, we make our voices heard by lawmakers and…
May of 2020 has brought unprecedented challenges and changes, the world over. We hope you find comfort in knowing that the GBS|CIDP Foundation has made every effort to continue to Educate our patients in new and innovative ways.
COVID-19 Ask the Experts with Dr. Ken Gorson, part of our educational series featuring medical experts from the Foundation’s Global Medical Advisory Board.
The National Organization of Rare Disorders (NORD) launched a COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the current pandemic. The program provides financial relief that may be utilized to support critical, non-medical needs. The COVID-19 Critical Needs Non-Medical Assistance Fund provides eligible individuals impacted by the…
Grifols Announces Formal Collaboration with US Government to Produce the First Treatment Specifically Targeting COVID-19
By Dr. David Saperstein Antibodies (also known as immunoglobulins) play an important role in health and illness. Many of you regularly receive intravenous immunoglobulin (IVIG) to treat your autoimmune disease. Flooding a person’s system with antibodies from normal, healthy individuals can reverse problems caused by abnormally overactive immune systems. However, providing antibodies that fight a specific infection can…
Partnership brings together world-leading plasma companies to focus on developing and delivering a hyperimmune immunoglobulin in the global fight against COVID-19.
Patient groups praise U.S. guidelines that designate plasma centers, manufacturing sites as essential. See full article
Earlier this week, the Center for Medicare and Medicaid Services (CMS) released new guidelines for the coverage of home infusion during the COVID-19 pandemic. The new guidelines allow for more flexibility for patients and their physicians to decide the best setting for ongoing treatments. Given your current situation, you may be able to access home…
COVID-19 is causing significant concerns globally. Watch a recording of this March 27 Webinar produced by the National Health Council, for caregivers of patients with chronic diseases. The webinar discusses how caregivers can best avoid the illness and care for themselves while also helping those who are not well. https://nationalhealthcouncil.org/coronavirus-preparedness-for-people-with-chronic-diseases-what-do-caregivers-need-to-know/
The GBS|CIDP Foundation International recently led the American Plasma Users Coalition (APLUS) in creating a letter to federal and state agencies regarding two important topics to our community: plasma donations and home infusion. The Foundation and APLUS want to make sure that lawmakers are aware that plasma collection centers are considered “essential” according to the…