Global Network of Neurofibromatosis Patient Organisations


Program for the NF Best Practice 2023

NF Best Practice
Oct 15th, 2023

9:30 – 9:40Welcome and opening – with NF Patients United & NFV Nederlands
9:40 – 10:00EU PEARL: EU-Patient Centric Clinical Trial Platforms – by Rianne Oostenbrink
10:00 – 10:20ERN GENTURIS Clinical guidelines NF1 tumour management*) – by Claas Roehl and ERN GENTURIS Schwannomatosis guidelines**) – by Melpo Pittara
10:20 – 10:40Quality of care: Checklist for health care professionals – by NF Kinder
10:40 – 11:00Break
11:00 – 11:20NF Academy 2023: Training for young ambassadors – by Marit Lommelaars (NFVN)
11:20 – 11:40Building health literacy in the NF2 patient community – by Gilles Atlan from NF2 BioSolutions
11:40 – 12:00Breast cancer and NF1 – by Caitriona Plunkett & CTT
12:00 – 12:40Break
12:40 – 13:00Impact of rare diseases on mental health & wellbeing – by Matt Boltz Johnson from EURORDIS
13:00 – 14:00Patients Needs: presentation & panel discussion with Alexion
14:00 – 14:20Break
14:20 – 14:30NF1 and Sexuality – by Sarah van Dijk, specialist nurse NF1, Expertisecenter MC Erasmus Rotterdam
14:30 – 14:40Wisbits NF1 App learning platform – by Ine Israel (NFVN) and Nicole van ‘t Woud (CEO of Blendin Solutions)
14:40 – 15:00NF Conversation Cards – by Hannie van Essen from NFVN
15:00 – 15:15Closing & good bye
*) ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1 (link)
**) ERN GENTURIS clinical practice guidelines for the diagnosis, treatment, management and surveillance of people with schwannomatosis (link)

Bio of the speakers

Please download more info from the speakers at the NF Best Practice here.

Support the NF Best Practice with your donation

As an association we have to rely on regular donations. This is the only way we can ensure our activities and projects like our annual NF Best Practice for people living with neurofibromatosis. Virtual participation there is free for all, but we appreciate every support for the event!

Every donation – no matter how small – makes a difference!

The NF Best Practice is conducted by NF Patients United together with Neurofibromatose Vereniging Nederland:

The NF Best Practice is realised with the support of:

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