Global Network of Neurofibromatosis Patient Organisations

NF community

This was the NF Community Day 2022

At the NF Community Day in Manchester NF brought together NF patients with clinicians and caregivers, where patients can learn about the disease from NF experts. It also included an interactive session to help the medical world further understand the needs of the community. After that day the NF Scientfic meeting took place.


You can watch all the presentations from the NF Community Day on our youtube channel. Subtitles are included in all the recordings. Here you can watch all the talks and discussions:

The final session on the NF Communty Day was a discussion by patients with NF1, Merlin (NF2) and Schwannomatosis. They talk about how to handle every day life with a rare disease. Watch their inspring talk here:

πŸ’™πŸ’š Thanks for your open words Ruby, Joao and Melpo! πŸ’™πŸ’š


NF Scientific Meeting &
NF Patients United Award

On the 10th and 11th October 2022, the 20th European Neurofibromatosis (NF) Meeting took place in Manchester. By being part of a big scientific meeting we have seized the opportunity to connect with our doctors at the NF Scientific meeting 2022 in Manchester.
With awarding the most important NF experts for their work NF Patients United handed over the NF LIFETIME ACHIEVEMENT AWARD to: Prof. Gareth Evans, Prof. Rosalie Ferner and Dr. Susan Huson.

πŸ’™πŸ’š Thanks for your outstandig work for people with Neurofibromatosis πŸ’™πŸ’š


NF1 – Community Award

To honour the work for people with Neurofibromatosis, NF Patients United handed over the NF Community award to the most important young academic researchers. At the NF Community Day in October 2022 the patient audience voted for the best project in the category NF 1 for Megan Stevens from the University of Exeter. She worked on “Synthetic lethal screening identifies existing autophagy drugs with selectve viability effects on Neurofibromatosis type-1 tumours using a Drosophila cell model”. CONGRATULATIONS!

Our further nominees for the award in this close race were:
– Ina Ly from the Massachusetts General Hospital. She worked on the “Comparison of a STIR- and T1-weighted-based radiomics model to differentiate between plexiform neurofibromas and MPNSTs in NF1” and
– Line Kenborg MSc, PhD, who worked on “Increased risk of endocrine morbidity in individuals with NF1”.

We thank all the researchers for presenting their work – fitting for the NF patients community on that day!


NF2 & Schwannomatosis – Community Award

At the NF Community Day in October 2022 the patient audience voted for the best project in the Category NF 2 (Merlin) & Schwannomatosis for Adam Paul Jones from the University of Manchester. He worked on “High dimensional imaging highlights the T-cell compartment as a potential therapeutic target in the vestibular schwannoma tumour microenvironment of both sporadic and NF2-associated Schwannomatosis”. CONGRATULATIONS!

Our further nominees for the award in this very close race were:

  • Daniel Lewis from the University of Manchester. He worked on the “The inflammatory and microvascular microenvironment in sporadic and neurofibromatosis type II related vestibular schwannoma” and
  • Grace E. Gregory, who worked on “Sporadic and NF2 Schwannomatosis Vestibular Schwannomas Share Homogeneous Tumour Microenvironments”.

We thank all the researchers for presenting their work for the NF patients community on that day!


Thanks to all who worked on the event with us. For to make this NF Community Day possible we worked together with the local NF patients community:

Childhood Tumour Trust
NF Ireland
Nerve Tumours UK
NF2 BioSolution
Can you hear us

And especially big thanks to πŸ’™πŸ’š the audience on site and also virtually πŸ’™πŸ’š


The NF Community Day 2022 in Manchester is supported by:

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