NF Patients United - Global Network of Neurofibromatosis Patient Organisations

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2021
2022
2023
2024
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Registration as it was on 09 Jan 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)

1.25 Fte (11)

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
    Servitengasse 5 / 16
    Vienna 1090
    AUSTRIA
    EU Office
    Servitengasse 5 / 16
    Vienna 1090
    AUSTRIA

    Website

    https://nf-patients.eu

  • People

    Total lobbyists declared

    11

    Employment timeLobbyists
    25%1
    10%10

    Lobbyists (Full time equivalent)

    1.25

    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

    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
    Dansk forening for NF Recklinghausen (Denmark) https://www.nfdanmark.dk
    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

    91,405€

    Major funding types in closed year

    Grants, Member's contribution, Donations

    Major contributions in closed year

    TypeNameAmount
    Contribution Alexion Pharma 50,700€
    Contribution Springworks Pharma 29,247€

    Major contributions in current year

    TypeNameAmount
    Grant EURORDIS 2,200€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    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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