Global Network of Neurofibromatosis Patient Organisations

NF Academy

Educating young NF Ambassadors

The NF Academy is a program to educate young people to become ambassador for the rare disease Neurofibromatosis. In this one week training there are lessons on medical topics for NF, mental health and essentials for the work as an ambassador for other patients. This event is conducted together with one our NF member organisations in  Europe.

The NF Academy 2023 in Lisbon

In summer 2023 NF Patients United launched its academy for young adults affected by Neurofibromatosis in Lisbon. It was an educational program, a mixture of joint discussions and individual work. Young patients and siblings of patients, learnt about NF1, NF2 and Schwannomatosis, patient advocacy, patient involvement in research and how to deal with the challenges that they are facing.

Now these NF ambassadors are trained to work with patient organizations on a national level and with NFPU on a European level, and that way represent the interests of young NF patients.

One of the ambassadors – Chris from Greece – put together a video. Participants from the 2023 NF academy talk about what the training was about and what they learned there. Watch his video here:

Next NF ambassador training

If you are interested to participate in a future editon of a young rare disease ambassador training, please let us know! Just send us a short email so that we can inform you early on any new events! Please email us: info@nf-patients.eu

Logo NF Academy 2023

The NF Patients Young Academy 2023 was conducted by NF Patients United together with the Portuguese NF patient organisation APNF

The NF patients academy 2023 was kindly supported by:


Watch this video from our previous NF Academy:

Support the NF Academy

Help us to support the NF Academy for more young ambassadors. Our last years participants want to secure places for more young NF Patients. Please support the go fund me campaign:

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© 2024 NF Patients United