Every year we from NF Patients United come together to share information about the latest news in the field of NF.
So in May we held our annual NF Best Practice Summit for NF patients and caregivers – a wonderful opportunity to come together, share knowledge, and connect. This year, we met in beautiful Barcelona, joined by our local member organizations ACNefi, to highlight the latest developments in NF research, showcase our ongoing projects, and celebrate the strength of our community.
We have now made all the videos available for you:
Clinical Aspects of NF
The meeting included expert-led sessions offering a comprehensive update on the current state of NF research. We were honored to welcome esteemed medical professionals and researchers, including Ignacio Blanco, Amedeo Azizi, Eric Legius and Robert Kesterson, who shared their insights and the latest scientific findings:
Award ceremony to Eric Legius
One of the highlights of the event was the presentation of our NF Lifetime Achievement Award to Dr. Eric Legius – in recognition of his outstanding dedication and lifelong contribution to the field of Neurofibromatosis. On behalf of patients and families everywhere, we thank Eric Legius for his tireless work and commitment.
English subtitles are included in all the recordings. Feel free to watch all talks and discussions of the event on youtube
Info for patients with NF2-related and non-related Schwannomatosis session
NF organisations show best practices
Our members and global network of NF patient organizations shared inspiring presentations, offering insights into the diverse ways they support NF patients and caregivers in their region. Our aim is to encourage others to take these standout projects as examples and spark similar efforts in their own communities.
More…
Further Matt Boltz Johnson from EURORDIS is conducting the Mental Wellbeing Partnership Network. He talks about how to address the mental health and wellbeing of rare disease patients and what the biggest issues are for people with NF.
We hope you enjoy browsing through all the talks. You find many more talks from the event on our youtube channel. We are happy about your feedback. If you want to get in contact, please write to us: info@nf-patients.eu.
The NF Best Practice Summit 2025 is kindly supported by:
