Overview
Lobbying Costs
17,500€
Financial year: Jan 2020 - Dec 2020
Lobbyists (Full time equivalent)
0.75 Fte (3)
Lobbyists with EP accreditation
0
High-level Commission meetings
1
Lobbying Costs over the years
-
Info
International Society for Neonatal Screening (ISNS)
EU Transparency Register
809390039113-90 First registered on 30 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,
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),Address
Head Office
Reigerskamp 273
Maarssen 3607HP
NETHERLANDS -
People
Total lobbyists declared
3
Employment time Lobbyists 25% 3 Lobbyists (Full time equivalent)
0.75
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
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
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/98Member organisations
None declared
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Financial Data
Closed financial year
Jan 2020 - Dec 2020
Lobbying costs for closed financial year
17,500€
Other financial info
Miscellanous income: ISNS irregularly earns net positive and negative results from bi-yearly organised ISNS conferences, between -10.000 an +40.000 euros. ISNS earns <500 euros per year for references preparations (Proficiency testing samples) produced under auspices of the ISNS.
ISNS’s account is yearly audited, as required by Dutch law.
Three ISNS/board members perform the EU-register related activities, all without compensation (apart from small fees to compensate for representation and travel expenses) and on voluntary basis-hence the lack of coherence between the number of persons under heading 10 and the estimated costs. The ISNS re-iterates this statement on 19.06.2021 as per your question of 07.06.2021. Nevertheless an approximation of costs if this work was compensated by market-accepted fees would be in the order of 10-24K. -
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
N/A
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 andsupport IPOPI and ESID.
Other activities
In 2008 ISNS contributed to the EU Public consultation on Rare Diseases
Meetings
Meetings
1 meetings found. Download meetings
The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.
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Date 28 Sep 2023 Location Brussels Subject Meeting of Commissioner Kyriakides with newborn screening associations Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
- Karolina Herbout-Borczak (Cabinet member)
Other Lobbyists