Global Network of Neurofibromatosis Patient Organisations

Mission and Goals

About 250.000 people in Europe are suffering from Neurofibromatosis. They all face very similar challenges: limited access to proper care, limited access to information, limited access to clinical trials, little awareness in the general public and also limited awareness among health care professionals. And all these people share one big dream: A cure for NF. That is the same vision that we have. To reach this final goal we need to take many steps. We are convinced, that we will get there faster together.

As a patient association we can contribute in many levels through financing personell, equipment and offering grants to young researchers. We refer to patient participation as involving patients in the whole decision making process, including their own treatment, the general medical care and research activites.

We contribute to the scientific community and for Neurofbromatosis patients by the following:

  • Act a as a communicational gateway to patients in whole Europe
  • Help to improve the international networks of doctors and researchers, as well as other health care professionals
  • Help with patient recruitment for clinical trials
  • Help gather data from patients (to enable studies)
  • Interact on a European political level
  • Raise awareness on a European level
  • Raise funds on a European level
  • Develope educational projects
  • Co-organising European meetings
  • Co-developing clinical guidelines
  • Contribute to improve access of care for NF patients
  • Contribute to improve quality of care for NF patients
  • Contribute to develop study designs, endpoints, patient reported outcomes
  • Identify unmet needs in the NF patients community

NFPU Mission Statement and Vision

Watch the video which shows the vision of NF Patients United here. It is presented from the NFPU president Claas Roehl at the annual meeting 2020:

Find out more videos from NF Patients United and its best practice on our YouTube channel.

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