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.

RECOMB project

RECOMB is led by Prof Frank Staal, from Leiden University Medical Center, and aims at developing and testing a gene therapy for children affected by a specific type of severe combined immunodeficiency (SCID): Recombinase Activating Genes (RAG) deficient SCID.

The project has been recently approved by the European Commission and is being funded through the EU Horizon 2020 research budget to develop this ground-breaking therapy.

IPOPI is actively contributing to the project by providing the patient perspective on key aspects of the projects and contributing to communications activities with a wide range of stakeholders.

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

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.