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NF Patients United - Global Network of Neurofibromatosis Patient Organisations

Acronym: NFPU

General Information

Identification Code: 370223242487-93
Website: [object Object]
Entity Form: non profit organization
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 5/5/2021
Last Update: 1/9/2024
EP Accredited Number: 0

Mission & Interests

Goals: 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
Interests Represented: Does not represent commercial interests
Interests:
  • Communication
  • Public health
  • Research and innovation
  • Youth
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: European Joint Programme on Rare Diseases (EJP RD) EU beating cancer plan European Rare disease research Coordination and support Action Consortium (ERICA)
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/
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Servitengasse 5 / 16
Post Code: 1090
City: Vienna
Country: AUSTRIA
Phone: [object Object]

EU Office

Address: Servitengasse 5 / 16
Post Code: 1090
City: Vienna
Country: AUSTRIA
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 10
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 0
Members: 11
Members F T E: 1.25
Info Members: With the exception of one project manager NFPU, all active persons work on a voluntary basis.

Structure

Structure Type: Structure
Is Member Of: 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/
Organisation Members: EURORDIS http://eurordis.org