Global Network of Neurofibromatosis Patient Organisations

NF Patients Academy 2020

Educating young NF Ambassadors

In summer 2020 NF Patients United launched an academy for young adults affected by Neurofibromatosis. It was an online educational program, a mixture of webinars, discussions and home assignments. Young patients, or siblings of patients, could learn about NF1, NF2 and Schwannomatosis, patient advocacy, patient involvement in research and how to deal with the challenges that they are facing.

Details of the NF Patients Academy:

Program format: Online – Calls in 9 modules (~2 hours each)
plus small individual works
Age group: 16 – 29 years
Participants can be patients, siblings or parents of children with NF
– for NF Patients United members: none
– for participants outside NF Patients United: € 25,- registration fee

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 end of summer 🙂

Topics: In total the NF Patient Academy 2020 will have 9 modules held by various speakers. The modules are NF clinic & science, Psychosocial dimension of NF,  Patient Advocacy, Patient involvement in research, Awareness-raising, Lifestyle and NF, Living and coping with NF, Position Paper and initiating a young NF ambassador group.

Dates for the NF patients academy 2020 (subject to changes):
Module 1: 20. July, 2020 – Getting started!
Module 2: 1. Sept., 2020 – Patient Advocacy with Carina Schneider (Childhood Cancer International)
Module 3: 4. Sept., 2020 – NF Clinic & Science with Dr. Amedeo Azizi (Medical University Vienna)
Module 4: 9. Sept., 2020 – Patient Involvement in Research with Claas Röhl (NF Kinder)
Module 5: 11. Sept., 2020 – Fundraising with Claas Röhl (NF Kinder) & Awarenessraising with Claudia Altmann-Pospischek (Cancer Blogger)
Module 6: 16. Sept., 2020 – Psychosocial dimension of NF with Dr. Thomas Pletschko (Medical University Vienna)
Module 7: 18. Sept., 2020 – Lifestyle and NF with Svenja Franke-Bruhn (Vienna Pink Dragons) & Dr. Bernhard Franzke (City Boot Camp)
Module 8: 23. Sept., 2020 – Living and coping with NF with Marlene Penz (Psychologist)
Module 9: 25. Sept., 2020 – Young NF ambassadors group with Alicia Semotan & Claas Röhl

Starting time:
3PM – 5PM (London, Lisbon)
4PM – 6PM (Amsterdam, Berlin, Rome, Vienna)
5PM – 7PM (Athens, Ankara, Moscow)

Diploma: Certificate as NF Ambassador

Contact us: