Neurofibromatosis Type 2 name change
22 September 2023
THE NEW NAME FOR NEUROFIBROMATOSIS TYPE 2 IS NF2-RELATED-SCHWANNOMATOSIS (NF2).
The name change reflects the fact that neurofibromas do not occur in NF2 and therefore the name neurofibromatosis is factually incorrect. When previous tumour pathology tests are reviewed these are definitely not neurofibroma although a cross over tumour called a hybrid tumour is sometimes seen in NF2-related and other schwannomatosis. The continued naming of NF2 as a neurofibromatosis only causes confusion with NF1 even amongst the medical profession.
Although the committee did look into changing the gene symbol, the Human Genome Naming Commission felt that the symbol was too long standing in the literature but did agree to changing the gene name to NF2 -Moesin Ezrin Radixin like (MERLIN) tumour suppressor from the previously highly inaccurate 'neurofibromin 2'.
As such, we have now changed all the schwannomatosis conditions to reflect the underlying gene, thus: NF2-related-schwannomatosis, SMARCB1 related schwannomatosis, LZTR1 elated schwannomatosis, 22q related schwannomatosis and schwannomatosis NOS (Not otherwise specified).
We recognise that other tumour types occur and may even be the most important in some individuals such as meningiomas and ependymomas but the committee felt NF2 related schwannomatosis was the best and most pragmatic option.
We at Nerve Tumours UK are in the process of updating our medical publications and resources in print and digital where relevant. This will however not be reflected in our news section and other non medical publications digital and print.
Filter News
_800_600_s_c1.jpg)
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More
Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
Read More_800_600_s_c1.jpg)
Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
Read More
Do charity ads get on your nerves?
The 4th NTUK and RBH digital media awareness campaign features a cheeky attention grabbing advert
Read More
Laura’s NF1 Awareness Story
Laura shares her NF1 story and tells us how she is raising awareness for World NF Awareness Month
Read More_1_800_600_s_c1.jpg)
Living with Neurofibromatosis Type 1: A Journey of Resilience, Transformation, and Impact
Our new charity ambassador, Amit Ghose, shares his inspirational story.
Read More_1_800_600_s_c1.jpg)
NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
Read More