Screen4Rare continues advocating for newborn screening for rare diseases!

Screen4Rare, the platform let by IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID) has made progress in the past months. As part of its strategy, Scree4Rare has reached out to the European Reference Network for PIDs and other auto-immune and auto-inflammatory disorders (ERN RITA) and to the Reference Network for hereditary metabolic disorders (MetabERN). These two Networks provided their support to the initiative and will be willing to support future work.

The platform has also been in contact with representatives of the European Commission and of the European Parliament to continue raising awareness on the importance of the campaign as well as keeping informed the based of supporters in these institutions.

Stay tuned for upcoming updates through the EU Health Policy Platform where Screen4Rare has become a Stakeholder Network to update the wider community of its progress. More information can be found here.

 

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IPOPI Clinical Care Webinars – year-round PID Education

IPOPI Clinical Care Webinars are aimed at patient group leaders, clinicians and nurses with an interest in PID clinical care management

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IPOPI XVI Global Patients Meeting – First ever online!

IPOPI had the great pleasure of welcoming 200 delegates from 40 countries from all over the world to the XVI Global Patients Meeting (GPM).

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Leaflets Options (copy)

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