International Society for Neonatal Screening
Acronym: ISNS
General Information
Identification Code: 809390039113-90
Website: [object Object]
Entity Form: Netherlands-based International Association.
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 7/30/2020
Last Update: 1/12/2024
EP Accredited Number: 0
Mission & Interests
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.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
- Public health
- Research and innovation
Levels of Interest:
- european
- global
Activities
Main EU Legislative Proposals: 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
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Reigerskamp 273
Post Code: 3607HP
City: Maarssen-Stichtse Vecht
Country: NETHERLANDS
Phone: [object Object]
EU Office
Address: Reigerskamp 273
Post Code: 3607HP
City: Maarssen-Stichtse Vecht
Country: NETHERLANDS
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: As stated in other years, when it comes to European activities the ISNS operates with members that work completely voluntarily, hence a discrepancy between the annual costs for activities (that are low) and the results achieved in a given year. In 2023 we were quite successful, a testimony of which will be published at the EU HPP.
Membership Information
Members10 Percent: 0
Members25 Percent: 3
Members50 Percent: 0
Members75 Percent: 0
Members: 3
Members F T E: 0.75
Info Members: Please note that all persons are involved as part of their voluntary, pro bono, activities for the International Society for Neonatal screening.
Structure
Structure Type: Structure
Is Member Of: Associated with Health First Europe
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: Please refer to:
https://www.isns-neoscreening.org/links/
Additionally:
Associated with Health First Europe
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