Global Network of Neurofibromatosis Patient Organisations

NF Patients Academy 2020

Educating young NF Ambassadors

This summer NF Patients United launches an academy for young adults affected by Neurofibromatosis. It will be an online educational program, a mixture of webinars, discussions and home assignments. 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.

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

Register here

We look forward to your participation at the NF Patient Academy 2020! Registration deadline is on June 30th, 2020.
For late registrations please contact us per email!

Register here for your participation at the NF Patient Academy:

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