NF Patients United - Global Network of Neurofibromatosis Patient Organisations
Recent meetings
No recorded meetings with EU commissioners.
Mission & 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
EU Legislative Interests
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 the rare disease Neurofibromatosis Find the info on our website: https://www.nf-patients.eu/
Interests Represented
Does not represent commercial interests
Member Of
EURORDIS - http://eurordis.org European NF group - https://enfg.eu/
Organisation Members
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 AESNF (Spain) https://www.aesnf.com/ Panhellenica Association of Patients and Friends with NF (Greece). https://www.facebook.com/zwhmenf/?eid=ARC2ncFenj1_SfqOoMD6PLexRqD7el_YNZdCPHkQeOlR6ez9ArawUUrwM6RnF4LTipt3vd05samFSiH5 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/ LINFA https://linfaneurofibromatosi.com/