NF Patients United offers regular meetings 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.
NF Talks in Rotterdam 2023
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. 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:
EU-PEARL
This EU-Patient centric clinical trial platforms was co-designed by patients and community representatives as well as from NFPU. Presented by Rianne Oostenbrink from Erasmus MC.
NF1 Tumour Management
Clinical guidelines done in cooperation with NF patients help clinicians to manage tumours in NF1 patients. Claas Roehl explains this approach.
NF Conversation Cards
About the experiences with these specially designed
cards and how they can support NF specialists and patients
during and after consultations.
Schwannomatosis
NFPU patient represenative for Schwannomatosis Melpo Pittara was involved in the creation of the first clinical guidelines for Schwannomatosis
Wisbits NF1 App
The Wisbits NF1 app, is specially designed for people with
NF1 in cooperation with the NF1 centre of MC Erasmus
Rotterdam, Blendin Solutions and the NF Vereniging Nederlands.
Quality of Care
NF Kinder from Austria created a checklist for health care professionals to improve the quality of care in Austria.
Review of previous events by NF Patients United:
The Community Day in Manchester 2022
Sponsors of the NFPU best practice 2023:
Follow us:
© 2023 NF Patients United