International Society for Neonatal Screening
Budget
€10 — €0
EP Access
0
accredited persons
Staff
3
0.75 FTE
EU Grants
None
Mission & Goals
The vision of the ISNS is to detect neonatal conditions and prevent their adverse outcomes through excellence in neonatal screening. The mission of the ISNS is to enhance the quality of neonatal screening and medical services through dissemination of information, guidelines and best practices that benefit all family members and their babies by helping to ensure protection of babies from life-quality threatening conditions, such as phenylketonuria, congenital hypothyroidism, severe combined immunodeficiency, cystic fibrosis, hemoglobinopathies and many others.
EU Legislative Interests
Harmonisation of Neonatal screening, orphan medicinal product, advanced therapeutic medicinal products, crossborder healthcare directive, rare diseases, equal access to care, research and innovation, patient registries, biobanks, screening laboratory quality guidelines and standardization, treatment of inherited metabolic diseases, next gen sequencing, proteomics, metabolomics, genomics Related to: https://ec.europa.eu/health/home_en EU Action on Health, Improving health systems (especially European reference networks and digital health and care), Diseases and health threats (especially non-communicable diseases, more specifically, rare diseases),
Communication Activities
Harmonisation of neonatal screening in Europe, contributing to PID Forums at the European Parliament, position papers on relevant EU policy initiatives (?), contact with Members of the European Parliament, European Commission officials, to explain and further the vision and mission of ISNS and support IPOPI and ESID. Founding organisation of Screen4Rare which is part of the EU Health Policy platform, Cooperation with MetabERN, RITA and other EU European reference networks
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
Please refer to: https://www.isns-neoscreening.org/links/ Additionally: ISNS, International patient organisation for Primary Immunodeficiencies (IPOPI) and European Society for Immunodeficiencies (ESID) work the multi-stakeholder Screen4Rare initiative to promote the importance of neonatal screening. Screen4Rare is registered at the EU Health Policy Platform https://webgate.ec.europa.eu/hpf/network/home/98
Organisation Members
ISNS, International patient organisation for Primary Immunodeficiencies (IPOPI) and European Society for Immunodeficiencies (ESID) work the multi-stakeholder Screen4Rare initiative to promote the importance of neonatal screening. Screen4Rare is registered at the EU Health Policy Platform https://webgate.ec.europa.eu/hpf/network/home/98 IFCC International Federation for Clinical Chemistry
Additional Information
As stated in other years, when it comes to European activities the ISNS operates with members that work completely voluntarily, so at almost zero cost, except for travel and accommodation costs within Europe, which is limited, hence a discrepancy between the annual costs for activities (that are low) and the results achieved in a given year. This is also true in 2024. In 2024 we were quite successful, a testimony of which will be published at the EU HPP.
Commissioner Meetings
No recorded meetings with EU commissioners.