Global Network of Neurofibromatosis Patient Organisations

NF Patients Community Day

Every 2 years the European NF meeting takes place. It brings together clinicians, researchers and patient organizations to discuss the latest discoveries in NF research and care. It is also a great opportunity for young investigators and doctors to discover the field of NF.

In addition to the NF scientific meeting NF Patients United is organizing the NF patients community day on Sunday Oct 9th, 2022 in Manchester. All NF patients and caregivers are invited to attend the meeting in person at the conference or join virtually. There will be presentations by experts about NF, presentations of nominated NF Projects with a voting of the audience for the NF Patients United awards 2022.

A  hybrid format and live transcription for people with hearing impairments is offerd for your participation on site and virtually throughout the program.

The NF Community Day LIVE

Date: Sunday Oct 9th, 2022

Place: Mercure Manchester Piccadilly Hotel, Portland Street,


10:00 – 10:45 – Registration
10:45 – 11:00 – Welcome talk by NF Patients United
11:00 – 12:00 – Session 1: Diagnosis & Access to Care
12:15 – 13:15 Session 2: Quality of life
14:15 – 15:00 – NF community award
15:15 – 16:30 – Functioning Aspects:
– Parallel Sessions (A) Schwannomatosis & NF 2
– Parallel Sessions (B) NF 1
16:30 – 17:15 – Panel Discussion “Follow your dreams“

You can find the detailled program here.

Watch all the talks on YouTube

Feel free to watch all the talks from the NF Community Day on our YouTube channel. We 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!

The NF Patients Community Day 2022, Manchester is supported by: