Global Network of Neurofibromatosis Patient Organisations

NF Best Practice 2023 in Rotterdam

NF Patients United offers a regular meeting for patients and caregivers to learn about Neurofibromatosis and what can be improved when living with this rare disease. This way we offer the opportunity to engage and learn more about Neurofibromatosis and its mental health issues.

The latest NF Best Practice Day was held in October 2023 in Rotterdam, Netherlands. NF experts and experts from the Rare Disease Community gave research updates and updates about NF projects from our member organisations around Europe. Find the detailled program here. All talks are aimed at patients with NF1, NF2-related Schwannomatosis and Schwannomatosis.

We have published the recordings on YouTube, so that you can watch or listen to these talks again. English subtitles are included in all the recordings. Feel free to watch the talks and discussions of the event here:

Mental Health & Wellbeing

Matt Boltz Johnson from EURORDIS talks about how to address the mental health and wellbeing of rare disease patients and what the biggest issues are for people with NF:

Health literacy in NF2

Gilles Atlan from NF2 BioSolutions explains what an NF2 diagnosis means for parents and those affected and how caregivers can learn about NF2 and to understand medical tests and diagnosis:

Young ambassador training in Lisbon, 2023

Marit Lomelaars and three NF Ambassadors that participated in the NF Academy in Lisbon this year, explain more about the informative week and their learnings:

Review of previous events by NF Patients United:

The Community Day in Manchester 2022

NF Open Meeting 2021

NF Open Meeting 2020

Sponsors of the NFPU best practice 2023:

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