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/
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…
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…
In the news today, the European Commission approves Takeda’s HYQVIA, a new maintenance therapy for patients with CIDP. The Foundation advocates for access to all products at all points of…
TAKEDA receives positive CHMP opinion for HYQVIA® as maintenance therapy in patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use…
On 12 September 2023, the European Parliament adopted the report on new rules governing the use of so-called substances of human origin (SoHO) intended for human application. The Council still needs to…
