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…
European Commission approves Takeda’s HYQVIA
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)
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…
SoHo Regulation in Trilogue Negotiation
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…
2024 Research Grant Opportunities
As part of the GBS|CIDP Foundation International’s mission to provide education and support research, we offer research grants to qualified applicants. Through the generosity of these many individual contributors, to…
European Parliament adopts substances of human origin (SoHO)
European Parliament adopts substances of human origin (SoHO) On 12 September 2023, the European Parliament adopted the report on new rules governing the use of so-called substances of human origin…