The GBS-CIDP Foundation recently joined the Critical Medicines Alliance, an initiative launched by the European Commission for the next 5 years. The objective of the Alliance is “to serve as a…
Nancy Di Salvo, the International Affairs Director, shares her personal patient story with the LIFE Association (https://www.zivotorg.org/) in Word for Life, the first specialized magazine dedicated to rare diseases in…
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…
GBS is a rare immune disorder that damages peripheral nerves (that is, nerves outside of the brain and spinal cord). In most people GBS is triggered by exposure to an infectious illness,…
As our International activities proceed, reaching out to our volunteers all over the world to understand their local activities, critical aspects and goals for the future, we were recently contacted…
Our International Liaison from the Dominican Republic, Rosa Valero, participates in a local Radio Talk show to raise awareness on Rare Disease Day.
Director of International Affairs, Nancy Di Salvo participated in a GBS|CIDP, MMN awareness meeting held at the local Franciscan Fraternity – Ordine Francescano Secolare – OFS – Bagheria (Italy) over the…
Executive Director Lisa Butler discusses legislation, for patients on Medicare, with NHC. Full article here: https://nationalhealthcouncil.org/blog/guest-post-legislation-needed-to-improve-access-to-vital-treatment-for-medicare-rare-disease-patients/
