Stakeholder collaboration

Objective 4: To stimulate stakeholder collaboration

European Reference Network for PIDs

IPOPI is currently collaborating with the European Reference Network RITA. RITA stands for Rare Immunodeficiency, Autoinflammatory and Autoimmune and unites specialised centres in Europe dedicated to Primary Immunodeficiencies and other autoinflammatory and autoimmune disorders.
This collaboration between healthcare specialists responds to a European initiative launched by the European Commission to create European Reference Networks that can support patients living with rare disorders. As one of the first partners involved, IPOPI is committed to giving voice to the needs of patients with PIDs.

SCIDNET initiative

SCIDNET is an ambitious project, financially supported by the European Commission, aimed at developing genetic medicines for Severe Combined Immunodeficiency (SCID) to be licensed in the next 4 years.
The initiative led by Prof Bobby Gaspar (University College of London and IPOPI’s Medical Advisory Panel Chairman) benefits from the participation of 10 partners representing leading university hospitals, associations and Small and Medium Enterprises in Europe. IPOPI is participating to represent the views of patients with primary immunodeficiencies (PIDs).
More information can be found at www.scidnet.eu

PLUS, the Platform of Plasma Protein Users

PLUS, the Platform of Plasma Protein Users, is formed by European Haemophilia Consortium, Alpha-1 Global, GBS/CIDP, HAEI, World Federation of Haemophilia, APLUS and IPOPI. PLUS meets every year to discuss pressing topics concerning plasma products and their impact on patients’ health.
PLUS’s recent meeting discussed the revision of the EU Blood Directive and the topic of Men having Sex with Men (MSM) in Blood Donations.