The Conference for NF Patients
NF Best Practices Summit 2025
English transcript &
Translations in many languages
Available during all talks
Date: May 3, 2025
Time: 9:30 AM – 3:30 PM (CET)
Format: Online via Zoom
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The Latest in NF Research & Treatment
The NF Best Practices Summit 2025 aims to bring together patients, caregivers, healthcare professionals, and researchers to share knowledge, learn from each other, and discuss the latest developments in neurofibromatosis (NF) care and treatment. This free, online event is designed to create a collaborative space where the NF community can exchange best practices, connect with experts, and stay informed about the newest research and advancements in NF management.
The theme of this year’s summit is “Empowering Patients, Advancing Research”. We will focus on providing practical insights into NF care, the latest breakthroughs in NF research, and how the patient experience is central to the ongoing development of effective treatments. This summit will also offer opportunities to discuss challenges, share personal stories, and foster a sense of community within the NF network.
The program of the NF Best Practices Summit will feature expert talks from renowned speakers, including Dr. Eric Legius and Ignacio Blanco, who will share the latest advancements in NF research and treatment. Additionally, our member patient organizations will present valuable insights and real-life experiences, fostering collaboration and knowledge sharing within the NF community.
Accessibility
Live transcript
Live transcription services for individuals with hearing impairments will be available throughout the entire program to ensure full participation.
NF Patients United
About
The NF Best Practice Summit is the regular NF conference launched by NF Patients United to address the needs of patients and caregivers as well as for NF patient advocates. It is conducted together with our member patient organisations. Here we focus on patients demands
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Registration
To register for free virtual participationat the NF Best Practices Summit, simply fill out the registration form below. Once registered, you will receive a confirmation email with the Zoom link before the meeting.
The NF Best Practices Summit will kick off at 9:30 AM with an introduction to the day’s events.
From 10:00 AM to 12:00 PM, we will hear from leading NF1 medical experts, followed by an engaging panel discussion. At the same time, a parallel session will focus on the clinical aspects of NF2-related Schwannomatosis and Schwannomatosis.
After a tribute to key scientists in the field of NF and a short break, we will dive into the NF Best Practices Sessions from 12:30. During these sessions, patient organizations will present their projects aimed at improving the situation for patients, inspiring others to implement similar initiatives.
Each presentation will be followed by a discussion where the audience can ask questions and engage with the speakers.
After the inspiring talks, the NF Best Practices Summit will conclude at 15:45 PM, wrapping up a day filled with valuable insights, discussions, and collaborative learning.
Patient Advocacy * patient involvement * NF research * educating young ambassadors
Speakers
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AGENDA
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Highlights
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Cooperation
The NF Best Practice Summit is carried out together with:
Support
The NF Best Practice Summit is kindly supported by:
ABOUT NFPU
NFPU stands for NF Patients United, and is Europe’s umbrella organization around Neurofibromatosis. By combining the efforts of all organizations, we try to find answers on Neurofibromatosis. Find out more here.
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