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 (requested)
Module 4: 9. Sept., 2020 – Psychosocial dimension of NF (requested)
Module 5: 11. Sept., 2020 – Fundraising with Claas Röhl (NF Kinder) & Awarenessraising with Claudia Altmann-Pospischek (Cancer Blogger)
Module 6: 16. Sept., 2020 – Patient Involvement in Research with Claas Röhl (NF Kinder)
Module 7: 18. Sept., 2020 – Lifestyle and NF (requested)
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
3PM – 5PM (London, Lisbon)
4PM – 6PM (Amsterdam, Berlin, Rome, Vienna)
5PM – 7PM (Athens, Ankara, Moscow)
Diploma: Certificate as NF Ambassador
We look forward to your participation at the NF Patient Academy 2020! Registration deadline is on June 30th, 2020. If you are not sure by now, but you want to get all relevant infos and news on getting NF Ambassador, please fill in this form and mark that beneath.
Register now for your participation at the NF Patient Academy and secure your place:
Contact us: email@example.com