Here you find the actual program and schedule for the NF Best Practice 2023. Captions in English and Dutch are offered during the event.
SCHEDULE
NF Best Practice
15. Oct 2023
Timezone: Rotterdam CEST (UTC +2)
| Time | Topic |
|---|---|
| 9:30 – 9:40 | Welcome and opening – with NF Patients United & NFV Nederlands |
| 9:40 – 10:00 | EU PEARL: EU-Patient Centric Clinical Trial Platforms – by Rianne Oostenbrink |
| 10:00 – 10:20 | ERN GENTURIS Clinical guidelines NF1 tumour management*) – by Claas Roehl and ERN GENTURIS Schwannomatosis guidelines**) – by Melpo Pittara |
| 10:20 – 10:40 | Quality of care: Checklist for health care professionals – by NF Kinder |
| 10:40 – 11:00 | Break |
| 11:00 – 11:20 | NF Academy 2023: Training for young ambassadors – by Marit Lommelaars (NFVN) |
| 11:20 – 11:40 | Building health literacy in the NF2 patient community – by Gilles Atlan from NF2 BioSolutions |
| 11:40 – 12:00 | Breast cancer and NF1 – by Caitriona Plunkett & CTT |
| 12:00 – 12:40 | Break |
| 12:40 – 13:00 | Impact of rare diseases on mental health & wellbeing – by Matt Boltz Johnson from EURORDIS |
| 13:00 – 14:00 | Patients Needs – Research with the help of AI (including panel discussion) |
| 14:00 – 14:20 | Break |
| 14:20 – 14:30 | NF1 and Sexuality – by Sarah van Dijk, specialist nurse NF1, Expertisecenter MC Erasmus Rotterdam |
| 14:30 – 14:40 | Wisbits NF1 App learning platform – by Ine Israel (NFVN) and Nicole van ‘t Woud (CEO of Blendin Solutions) |
| 14:40 – 15:00 | NF Praatkaarten – by Hannie van Essen from NFVN |
| 15:00 – 15:15 | Closing & 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
… follows soon …
Registration
For to participate online, please register here for free:
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:
Sponsors of the NFPU best practice 2023:
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