International Society for Neonatal Screening

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Registration as it was on 04 Jan 2023
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Lobbying Costs


Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

0.75 Fte (3)

Lobbyists with EP accreditation


High-level Commission meetings


Lobbying Costs over the years

  • Info

    International Society for Neonatal Screening   (ISNS)

    EU Transparency Register

    809390039113-90 First registered on 31 Jul 2020

    Goals / Remit

    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.

    Main EU files targeted

    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:
    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),


    Head Office
    Reigerskamp 273
    Maarssen-Stichtse Vecht 3607HP
    EU Office
    Reigerskamp 273
    Maarssen-Stichtse Vecht 3607HP


  • People

    Total lobbyists declared


    Employment timeLobbyists

    Lobbyists (Full time equivalent)


    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    Please note that all persons are involved as part of their voluntary, pro bono, activities for the International Society for Neonatal screening.

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories


    Non-governmental organisations, platforms and networks and similar

  • Networking


    Please refer to:

    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

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Promotes their own interests or the collective interests of their members

    Closed financial year

    Jan 2022 - Dec 2022

    Lobbying costs for closed financial year


    Major contributions in closed year

    None declared

    Intermediaries for closed year

    None declared

    Intermediaries for current year

    None declared

    Closed year Costs

    0€ - 10,000€

    Other financial info

    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 2022 we were quite successful, a testimony of which will be published at the EU HPP.

  • EU Structures

    Groups (European Commission)


    Groups (European Parliament)


    Other activities

    In 2008 ISNS contributed to the EU Public consultation on Rare Diseases

  • Meetings


    None declared

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