NF Patients United

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 national and European political level
  • Raise awareness on a European level
  • Raise funds on a European level
  • Support educational programs
  • Help to organize European meetings
  • Contribute to develop clinical guidelines
  • Contribute to improve access of care for NF patients
  • Contribute to improve quality of care
  • Identify unmet needs in the NF patients community
  • Contribute to develop study designs, endpoints, patient reported outcomes

You find information on contributing to NF Patients United here.