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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.

SCIDNET website goes live

SCIDNET, a partnership initiative in which IPOPI is participating, has launched its new website www.scidnet.eu
SCIDNET is an ambitious project, financially supported by the European Commission, aiming at developing genetic medicines for Severe Combined Immunodeficiency that can be licensed in the next 4 years.
IPOPI is participating so as to represent the views of patients with primary immunodeficiencies (PIDs). The initiative led by Prof Gaspar (University College of London) benefits from the participation of 10 partners representing leading university hospitals, associations and SME in Europe.

Press release

IPOPI celebrates World Primary Immunodeficiency Week at the European Parliament

On the occasion of World Primary Immunodeficiency Week, IPOPI organised on Tuesday 26th April a policy event at the European Parliament in Brussels. Members of the European Parliament Mr. Faria, Mr Zorrinho and Mr Piecha joined IPOPI, patient representatives from 9 countries, doctors, stakeholders and industry representatives to commemorate the importance of raising awareness on Primary Immunodeficiencies around the world. Participants to this meeting commemorated their participation by signing the 2016 Call for Action Improving access to care for patients with Primary Immunodeficiencies.

The celebration event featured two different sessions. The first one focussed on international developments. Ms Gabrielle Rosario, representing Primary Immunodeficiency Network of South Africa (PINSA), Ms Dragana Koruga, from Supporting Persons with Primary ImmunoDeficiencies (SPwPID/POsPID – Serbia), and Prof Aziz Bousfiha, representing Hajar (Morocco) introduced the participants to the recent developments and challenges PID patients were facing in their different regions of the world.

The second session looked into Europe and the policy initiatives that could support PID patients and healthcare specialists to provide patients the care they need. In that sense, Johan Prévot, Executive Director of IPOPI, looked into WPIW’s moto “Test. Diagnose. Treat” and highlighted the different policy dossiers that had been or would be developed by the European Union with an impact on PID patients’ lives. Important initiatives such as European Reference Networks, in which IPOPI is taking an active role, or the upcoming revision of the Blood legislation were highlighted.

This second session allowed for an interactive discussion amongst participants on the main activities developed on the occasion of WPIW and the challenges that still needed to be tackled in their different countries. Prof Warnatz closed the event by depicting the future of PIDs in 2020 in Europe with the very suggestive idea of the immune system as an umbrella supported by good quality Test, Diagnosis and Treatment.

A report on this meeting will soon be available on IPOPI’s website, along with the presentations and pictures from the event.