GBS|CIDP Foundation Hosts a Virtual Summit
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…
Clinical and care complexity, in Palermo around the round table of clinicians and patient associations.
May is GBS|CIDP Awareness Month
Building, Growing, and Expanding our community like never before! This awareness month we celebrate the expansion and inclusivity of our worldwide community! As our global network grows wider, our community…
GMAB Statement regarding recent GBS outbreak in Tlazcala Mexico
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,…
Global connections that go beyond GBS
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…
The Testimony of Rosa Valera with her “Rare” disease – Rare Diseases Day 2024
Our International Liaison from the Dominican Republic, Rosa Valero, participates in a local Radio Talk show to raise awareness on Rare Disease Day.
International Rare Disease Day 2024
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
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/
WHY RARE CONDITIONS DESERVE ATTENTION AND RECOGNITION AS A GLOBAL HEALTH CONCERN
As Rare Disease Day is approaching, CSL Behring is in touch with leaders of patient advocacy groups to explain why rare conditions deserve attention and recognition as a global health…
SoHo Regulation Update
Following the provisional political agreement reached on 14 December 2023, the EU institutions finalized the text for the Regulation which now enters the final stages of official approval. The text…