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:
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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