Latest news on COVID-19 and PIDs

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.

 

IPOPI calls for increased plasma collection during IPAW

IPOPI is glad to take part in the celebration of the International Plasma Awareness Week (IPAW), calling for national, regional and international decision makers to consider ways of safely increasing plasma collection. Sufficient plasma collection is much needed to ensure that many patients with primary immunodeficiencies (PIDs) continue to access the life-saving immunoglobulin replacement therapies.

Demand for immunoglobulin has been continuing to rise at a rate of 6-8% yearly in the past years, therefore, ensuring sufficient collection and supply of plasma has been an ongoing concern. The COVID-19 pandemic has led to a worldwide decline of blood and plasma donations which will lead to further strains on the supply of immunoglobulins.

Read the 7 measures IPOPI is calling for: IPOPI Statement for IPAW

 

 

 

More PID diagnostic tests included in the WHO EDL

For the second year in a row, tests for diagnosing primary immunodeficiencies (PIDs) have been included in this Model List.