Medisinske Nyheter

Learn more about NF and patient advocacy

By 17. desember 2023No Comments
Review of our Best Practice event for Neurofibromatosis patientsDear NF Community,We are happy that you were interested in the NF Best Practice Day 2023. It was held in October 2023 in Rotterdam, Netherlands. Now we have published all presentations on YouTube, so that you can watch or listen to these talks again.

It is great if you take up the opportunity to engage and learn more about Neurofibromatosis. In these videos you can find medical news about NF as well as relevant projects from patient organisations for the NF community. Besides getting new insights, we hope that you are able to collect ideas for your NF community.

English subtitles are included in all the recordings. Feel free to watch the talks and discussions of the event here.
VideosView all Marit LommelaarsNF Academy 2023Marit Lomelaars and three NF Ambassadors that participated in the NF Academy in Lisbon this year, explain more about the informative week and their learnings from it.
Matt Boltz JohnsonMental Health TalkMatt 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. Gilles AtlanHealth literacy in NF2Gilles 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.
EU PEARLEU-Patient Centric Clinical Trial Platforms – by Rianne OostenbrinkClinical guidlinesthat help clinicians to manage tumours in NF1 patients.Quality of CareChecklist for health care professionals
SchwannomatosisClinical Guidelines for Schwannomatosis patients by Melpo Pittara
Wisbits NF1 AppA learning platform for patients with NF1
NF Conversation CardsTo improve communication between patients and healthcare professionals

>> More videosWe hope you enjoy browsing through the talks. We are of course happy about your feedback: write to us: and subscribe to our channel and add a  👍 thumb up if you like the presentations. Thank you!
Picture with Christmas decorations We wish you and your beloved ones enjoyful winter holidays and time to relax.The team of NF Patients UnitedFollow us: DonationsSupport NF Patients UnitedIf you like our work for patients with Neurofibromatosis, support us financially!  As an association we rely on regular donations. Every small amount makes a difference.DONATE NOW