Global Network of Neurofibromatosis Patient Organisations

NF Patients United

Neurofibromatosis Patients United (NFPU) is the European  Neurofibromatosis umbrella patient association. Neurofibromatosis patients all around Europe face very similar challenges: limited access to proper medical an psychological care, limited access to information, limited access to clinical trials, little awareness in the general public and also limited awareness among health care professionals.
These challenges are easier to overcome together. For that we built a strong joined European association. European NF patient organisations need to exchange ideas and best practice models constantly. If we choose the best ideas, have and develope a common strategy and implement this strategy together all over Europe, we can save a lot of resources, while maximizing the impact of our activities.

These are the national patient organisations within NFPU:

Contact established (light blue):
NF Cyprus, Nerv Tumors UK, Neurofibromatosis Group Bulgaria, Association Kokcinelo (France), NFFNF (Norway), NF Sweden, NF Ireland, NF Poland

Data visualisation with

Find out how to get member at NF Patients United here: