European Foundation for the Care of Newborn Infants

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Registration as it was on 17 Dec 2024
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Overview

Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

Lobbying Costs

None declared

Financial year: Jan 2023 - Dec 2023

Lobbyists (Full time equivalent)

0.1 Fte (1)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    European Foundation for the Care of Newborn Infants   (EFCNI)

    EU Transparency Register

    33597655264-22 First registered on 08 Feb 2011

    Goals / Remit

    The European Foundation for the Care of Newborn Infants (EFCNI) is the first pan-European organisation and interactive network to represent the interests of preterm and newborn infants and their families. The foundation combines the strengths of scientists, healthcare professionals, patients, experts and key stakeholders in order to improve maternal, newborn and child health to ensure the best start in life for every newborn.

    Wwe are calling attention to the importance of newborn health and its significant impact on the children, families and our society. We want to reduce the enormous health and social inequalities linked to babies born too soon, too small or sick. To address these disparities and to increase the standard of newborn care, we initiated, e.g., the European Standards of Care for Newborn Health. You can find more information about EFCNI in our brochure "For the best start in life": www.efcni.org/wp-content/uploads/2020/06/2020_06_16_EFCNI_CorporateBrochure_EN_web.pdf

    Main EU files targeted

    In Europe and worldwide, preterm birth, low birth weight, asphyxia, congenital abnormalities, infections and birth trauma are the main causes of neonatal death. This project sheds light on the special care that the extremely vulnerable group of patients – preterm, sick, and low birthweight infants – need, especially from a nutritional point of view. Mother’s own milk is the preferred option for infant nutrition to achieve optimal growth, development, and health. When mother’s own milk is not available, donor human milk is the next best alternative, especially for preterm, sick and low birth weight infants; the next and last option is a specifically designed infant formula.

    Together with high-level international experts in the field of human milk, we have been successfully advocating the need for regulation in the European Union.

    The Regulation on Substances of Human Origin (SoHO) has been officially adopted by the EU Institutions on 27 May 2024 and will come into effect in mid-2027.

    Finally, there is a regulation on EU level that covers human milk and its donation. The Regulation was introduced to provide better protection for donors, recipients, and preterm, sick and low birth weight infants. It therefore aims to enhance the safety and quality of blood, tissues, and cells used in healthcare and to facilitate their cross-border movement within the EU. The new rules are designed to reinforce the current legal framework while offering greater flexibility to adapt to scientific and technological advancements and further innovation in this field. It will also help to promote a human milk diet, which is scientifically proven and internationally recommended for this very vulnerable group of patients.

    The Regulation aims to improve harmonisation and make it easier to exchange and access SoHO across borders, for example by creating an EU-level SoHO coordination board to help Member States implement the rules. Additionally, it introduces new approval and inspection requirements for establishments involved in the processing, storage, release, import, or export of SoHO.

    Address

    Head Office
    Hofmannstrasse, 7a
    München 81379
    GERMANY
    EU Office
    Hofmannstrasse, 7a
    München 81379
    GERMANY

    Website

  • People

    Total lobbyists declared

    1

    Employment timeLobbyists
    10%1

    Lobbyists (Full time equivalent)

    0.1

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    0 accreditations were / are live (in bold) for the selected state of 15 Jan 2025

    Name Start date End Date
    Ms Nicole Thiele 10 Mar 2015 07 Mar 2016
    Ms Iris Nikola Knierim 10 Mar 2015 07 Mar 2016
    Ms Nicole Thiele 13 Mar 2014 10 Mar 2015
    Ms Silke Mader 13 Mar 2014 12 Mar 2015
    Ms Iris Nikola Knierim 13 Mar 2014 10 Mar 2015
    Mrs Nicole Thiele 13 Mar 2014 27 Jan 2015
    Mrs Silke Mader 13 Mar 2014 27 Jan 2015
    Mrs Iris Nikola Knierim 13 Mar 2014 27 Jan 2015

    Complementary Information

    None declared

    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

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    EFCNI is member of:

    Every Newborn Action Plan, a global action plan taking against preterm birth / https://www.everynewborn.org/

    PMNCH (Partnership for maternal and newborn child health)/ http://www.who.int/pmnch/en/

    HNN (Healthy Newborn Network)/ http://www.healthynewbornnetwork.org/

    Alliance for Childhood/ http://www.allianceforchildhood.org/

    NIDCAP / https://nidcap.org/

    SEND / https://www.send-ev.de/

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2023 - Dec 2023

    Lobbying costs for closed financial year

    Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

    Total organisational budget in closed year

    2,523,677€

    Major funding types in closed year

    Other, EU funding

    Funding types "other" information

    Referring to the current available financials for the year 2023, EFCNI received funding from the following sources: Corporate partners: 66% of funding sources, whereas the highest contribution from a single company represented 21 % of the funding sources Public grants, other income (e.g., donations, interests): 18% of funding sources Restricted educational/research grants: 15% of funding sources

    Major contributions in closed year

    TypeNameAmount
    Contribution Chiesi 425,600€
    Contribution Sanofi 212,375€
    Grant Horizon 2020 110,305€

    Other financial info

    With all our corporate partners, we enter into a formal agreement confirming our full independency and compliance with law, anti corruption and anti bribery.

  • EU Structures

    Groups (European Commission)

    None declared

    Groups (European Parliament)

    N/A

    Communication activities

    Information regarding the implementation process, next steps and the principle of voluntary and unpaid donation, the European Commision Conference on the New Regulation on Substances of Human Origin, or the The Conference presentation on the comprehensive EU framework for safety and quality of SoHO can be found on the EFCNI website:www.efcni.org/human-milk-regulation/

    - Publications:
    www.efcni.org/wp-content/uploads/2020/09/2020_09_02_EFCNI_PretermInfantHealthHumanMilk_FINAL_ONEPAGER.pdf

    Making human milk matter: the need for EU regulation. The Lancet Child and Adolescent Health 2021; 5(3):161-163. Kostenzer J et al. https://doi.org/10.1016/S2352-4642(21)00021-3

    https://www.efcni.org/wp-content/uploads/2021/01/2021_01_21_EFCNI_MakingHumanMilkMatter_PolicyRecommendations_final-small.pdf

    https://www.efcni.org/wp-content/uploads/2018/05/2018_05_08_EFCNI_Milkbank_Toolkit_web.pdf

    https://www.efcni.org/wp-content/uploads/2018/05/2018_05_08_EFCNI_Positionpaper_web.pdf

    Other activities

    In 2021, EFCNI serves as consultant to the Commission for the registration of human milk.

    WORLD PREMATURITY DAY, 17 November
    EFCNI initiated World Prematurity Day together with its partnering patient organisations back in 2008.
    In 2014, this day was celebrated for the fourth time as World Prematurity Day, supported by many international, national, regional and local organisations, societies, healthcare professionals, individuals and private sector companies. About 1.5 billion people worldwide were reached through social media activities (social media platforms, TV/radio, print media) and more than 80 countries contributed with activities or events.

    EUROPEAN STANDARDS OF CARE FOR NEWBORN HEALTH
    EFCNI initiated and coordinates the European-wide project "Standards of Care for Newborn Health". About 220 experts, including patient representatives, from more than 30 countries developed standards in the field of newborn health/ prematurity. Long-term aim is an implementation of the standards within Europe to reach harmonized levels of care and the best start in life in every country.

    For this project, EFCNI has received the German Award "Land of ideas" in 2017
    www.newborn-health-standards.org

    The EFCNI ACADEMY aims at providing evidence-based, standardized trainings to professionals;

    EFCNI launches the worldwide patient voice GLANCE (GLobal Alliance for Newborn CarE) in 2019, a global network to represent the interests of babies born too soon, too small or too sick and their families. Initiated and coordinated under the umbrella of EFCNI, GLANCE aims at including parents, from all parts of the world to exchange knowledge and experience. GLANCE aspires to decrease the burden of afflicted families and their preterm and sick newborns to help them thrive beyond survival.

    EFCNI encourages all those involved or interested in the field of pre-conceptional, maternal and newborn health to interact and exchange ideas. It promotes mutual understanding and serves as a platform for the initiation, coordination and integration of all local, national, European- and worldwide activities promoting the best start in life for every newborn as well as the improvement of short- and long-term outcomes of hospitalised babies.

    EFCNI is particularly keen to establish a link between parents (patients), health professionals, scientists and different stakeholders.

    EFCNI offers national patient organisations, (European) health care societies, researchers and third parties as well as private and institutional sponsors a platform to interact, provides relevant information and tailored support services.

  • Meetings

    Meetings

    None declared

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