Global Network of Neurofibromatosis Patient Organisations


NF Best Practice 2023

Save the date for the NF Best Practice on Oct. 15th, 2023

Save the date for the NF Best Practice on Oct. 15th, 2023

On the 15th of October, NF Best Practice 2023 will go into its third round. This time, the meeting will be held in the Netherlands, specifically in Rotterdam. From 9:30 AM until 3:15 PM, NF experts and experts from the Rare Disease Community will give research updates and updates about NF projects from the different member organisations. All talks are aimed at patients with NF1, NF2-related Schwannomatosis and Schwannomatosis and their caregivers as well as for all interested.

* NF Best Practice *

Sunday, October 15th 2023
9:30 AM to 3:15 PM (CET)
Including life captioning in English and Dutch

There will be a virtual welcome speech from the Dutch pediatrician Dr. Rianne Oostenbrink about the project EU Pearl, followed by the Tumour Management Guidelines for Neurofibromatosis, a talk about breastcancer and NF1, a patient needs-research involving AI, a research project about NF1 and sexuality and many more. The participation is free!

For more information about the specific program, find the current timetable here:


JOIN our virtual NF Best Practice meeting with actual news from the Neurofibromatosis & Rare Disease Community:


Join us at the NF Best Practice 2023!

Join us at the NF Best Practice 2023!

Register here for your virtual attendance and to get all news and access to the NF Best Practice on Sunday, Oct. 15th, 2023. Please fill in one form per participant:

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

Sponsors of the NFPU best practice 2023:

Logo - Alexion AstraZeneca Rare Diseas
EURORDIS rare diseases europe

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