European Reference Network for PIDs a key element for improving PID care in Europe

Participants to the IPOPI 2016 World Primary Immunodeficiency Week Policy event identified European Reference Networks as an essential tool to improve care for PID patients. IPOPI is currently collaborating in the development of the Rare Immunodeficiency, AuToinflammatory and Autoimmune (RITA) Network, a European Reference Network uniting under the same umbrella, specialised centres in Europe dedicated to Primary Immunodeficiencies and other autoinflammatory and autoinmmune disorders.

This collaboration with healthcare specialists responds to a European initiative launched by the European Union to create European Reference Networks that will support patients living with rare disorders. As one of the first partners involved, IPOPI is committed to bringing the voice of patients with PIDs in the upcoming RITA Network.

The European Commission has identified the development of European Reference Networks as one of its top health priorities for the next years. ERNs for rare diseases are considered to be a net of high-quality, cost-effective specialised care that contribute to developing scientific research, treat patients from all over the European Union and ensure that subsequent care can be organised and provided to these patients. A call for proposals has been launched in March to those healthcare specialists wishing to apply to become an ERN. The call will remain open till 21st June 2016 and the whole assessment process may take between 6 to 8 months to complete.

Two PID questions to the European Commission

Two parliamentary questions have been tabled to the European Commission on the implementation of the Primary Immunodeficiencies Principles of Care and on Newborn screening for Severe Combined Immunodeficiency (SCID) as a result of the successful 6th PID Forum organised by IPOPI on the Principles of Care, on 6th December in Brussels.

The Portuguese Members of the European Parliament, José Inácio Faria (liberal group) and Carlos Zorrinho (social-democrat group) have been collaborating with IPOPI to prepare these questions addressed to the European Commission (EC) with the aim of raising awareness on primary immunodeficiencies.

The first question on the PID Principles of Care seeks to introduce the document to the EC, looks for its institutional endorsement and request that future action in the field of rare diseases and PIDs takes into account the recommendations contained.

The second question tabled by the Members of the European Parliament calls on the EC to push for the development of European guidelines on newborn screening for rare diseases, including SCID. The two politicians call for the European institution to support SCID newborn screening programmes across the European Union.

The European Commission is required to answer these questions within the next 6 weeks after their publication. IPOPI will follow the European Commission’s replies and will report on them.