Global Network of Neurofibromatosis Patient Organisations

NF Patients Academy 2021

Educating young NF Ambassadors

This summer 2021 NF Patients United again launches its academy for young adults affected by Neurofibromatosis. It will be an educational program, a mixture of joint discussions and individual work. Young patients, or siblings of patients, will learn about NF1, NF2 and Schwannomatosis, patient advocacy, patient involvement in research and how to deal with the challenges that they are facing.

Our training will allow them to become NF ambassadors and 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. They will meet patients with the same condition from all over Europe and work together for a better future for NF patients.

The NF Ambassador training 2021

This summer the NF young patients academy will take place in the city of Vienna, Austria. Or – depending on the situation of COVID19 in Europe and possible travelling restrictions – will be held as an online event.

Participants can be patients, siblings or parents of children with NF
Age group: 16 ā€“ 29 years
Diploma: Certificate as NF Ambassador

As a participants you need to have: The willingness to become active NF  patient advocates. Adequate English-skills (Level B2 and up) is needed to follow the discussions. You can test your language skills here. There is still time to improve your English until summer šŸ™‚

Topics: In total the NF Patient Academy 2021 will have several modules held by experts from varoiuos disciplines. The modules will cover NF clinic & science, psychosocial dimension of NF,  Patient Advocacy, Patient involvement in research, Awareness-raising and Lifestyle and NF. You will also get in contact with the young NF ambassadors group to share ideas and thoughts for the future of young NF patients.

More info

Melpo Pittara is one of the graduates of the NF Patient Academy in 2020. On the NF Patietns United annual meeting she presented the academy and her impressions of the edcucation. Watch her presentation here:

If you are interested to take part at the NF Patients Academy 2021 or you need some info, please contact us per email to get all the news:
We look forward to your participation!