NF Patients United - Global Network of Neurofibromatosis Patient Organisations

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2021
2022
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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 2022 - Dec 2022

Lobbyists (Full time equivalent)

1.5 Fte (12)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    NF Patients United - Global Network of Neurofibromatosis Patient Organisations   (NFPU)

    EU Transparency Register

    370223242487-93 First registered on 05 May 2021

    Goals / Remit

    NF Patients United is an international umbrella organization of non profit patient organizations that advocate for people affected by Neurofibromatosis (Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis) and their families. We aim to improve the quality of life of NF patients by:

    - raising awareness
    - providing access to information
    - educating patients/ caregivers and health professionals
    - supporting research and getting involved in research
    - raising funds

    NF Patients United is building links between:
    - NF patient community
    - scientific community
    - clinical doctors

    NF Patients United also advocates for NF patients and caregivers on a European level, through our involvement in European projects/ networks, like:

    - ERN GENTURIS
    - EU PEARL

    Main EU files targeted

    European Joint Programme on Rare Diseases (EJP RD)
    EU beating cancer plan
    European Rare disease research Coordination and support Action Consortium (ERICA)

    Address

    Head Office
    t´ Spiker 26
    Warnsveld 7231JT
    NETHERLANDS
    EU Office
    t´ Spiker 26
    Warnsveld 7231JT
    NETHERLANDS

    Website

    https://nf-patients.eu

  • People

    Total lobbyists declared

    12

    Employment timeLobbyists
    25%2
    10%10

    Lobbyists (Full time equivalent)

    1.5

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    With the exception of one project manager NFPU, all active persons work on a voluntary basis.

    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

    EURORDIS - http://eurordis.org
    European NF group - https://enfg.eu/

    Member organisations

    NF Kinder (Austria) www.nfkinder.at
    Ananas onlus (Italy) http://www.ananasonline.it
    ANF onlus (Italy) http://www.neurofibromatosi.it
    Croatian Neurofibromatosis Association https://hun.hr
    AANF (Spain) https://www.facebook.com/asociacionafectados.nf/
    ACNEFI (Spain) http://www.acnefi.org
    Panhellenica Association of Patients and Friends with NF (Greece). https://www.facebook.com/zwhmenf/?eid=ARC2ncFenj1_SfqOoMD6PLexRqD7el_YNZdCPHkQeOlR6ez9ArawUUrwM6RnF4LTipt3vd05samFSiH5
    Childhood Tumor Trust (UK) https://www.childhoodtumourtrust.org.uk/
    Neurofibromatosis Vereniging Nederland https://neurofibromatose.nl/home
    APNF – Associação Portuguesa de Neurofibromatose (Portugal). https://apnf.pt
    SNFV (Switzerland) https://www.neurofibromatose.ch
    Türkiye Neurofibromatozis Derneği http://www.nf.org.tr/
    NF Ireland https://www.nfaireland.ie/
    GER-NF https://www.gerneurofibromatosis.ch/

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2022 - Dec 2022

    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

    72,000€

    Major funding types in closed year

    Donations, Member's contributions

    Major contributions in closed year

    TypeNameAmount
    Contribution Alexion Pharma 51,000€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    None declared

    Groups (European Parliament)

    Disability,Cancer

    Communication activities

    Our NFPU annual meetings with a best practice for patients and caregivers with Neurofibromatosis is sponsored by EURORDIS since 2019
    We have educational trainings for young ambassadors for Neurofibromatosis

    Find the info on our website:
    https://www.nf-patients.eu/

    Other activities

    Members of NF Patients United have been involved in EMA procedures, such as participating in scientific advice.

    NFPU is a rather young organization that started its work in December 2018.

  • Meetings

    Meetings

    None declared

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