Overview
Lobbying Costs
9,999€
Financial year: Jan 2019 - Dec 2019
Lobbyists (Full time equivalent)
2.25 Fte (7)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
-
Info
NF Patients United (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 PEARLMain 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
Pfarrgasse 87
Vienna 1230
AUSTRIA -
People
Total lobbyists declared
7
Employment time Lobbyists 50% 2 25% 5 Lobbyists (Full time equivalent)
2.25
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
III - Non-governmental organisations
Subcategory
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)
Neurofibromatosis Vereniging Nederland https://neurofibromatose.nl/home
APNF – Associação Portuguesa de Neurofibromatose (Portugal). https://apnf.pt
NF Turkey http://www.nf.hacettepe.edu.tr
SNFV (Switzerland). https://www.neurofibromatose.ch
NF “22/17” (Russia) https://nf2217.ru -
Financial Data
Closed financial year
Jan 2019 - Dec 2019
Lobbying costs for closed financial year
9,999€
EU grant income for closed financial year
2,000 € (Source: EURORDIS)
Other financial info
None declared
-
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
Cancer
Communication activities
Our NFPU annual meeting 2019 in Parma/Italy was sponsored by EURORDIS
Find the info on our website:
https://www.nf-patients.eu/the-next-decade-for-nf-patients-in-europe/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