Reading real life stories about how NF2 affects people help others to understand why we need better treatments. Please help us to make that happen by donating to research, sharing your story & raising awareness
#endNF2 #NF2awareness #neurofibromatosistype2 #NF2SWN
#NF2support
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16 Dec 2025
Today we celebrate our fundraisers of 2025, you have all been brilliant sharing photos and details of your fundraising. So much fun was had.
We thank you all for raising vital funds to help us change the lives of those with NF2 through our research.
#endNF2 #NF2awareness #NF2SWN
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26 Jun 2025
Have you ever wondered: What is NF2-related schwannomatosis? You’re not alone — and we’re here to help.
Click here for the answer to a Big Question ➡️ youtube.com/shorts/38XTNzEIg…
#EndNF #NF2 #NF2SWN #MakeNFVisible
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22 May 2025
Today is NF2-SWN Awareness Day!
We recognize the strength of the NF2-SWN community and raise our voices for greater awareness, research, and support. Visit makenfvisible.org and spread the word.
#EndNF #MakeNFVisible #NF2 #NF2SWN
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15 May 2025
What exactly is NF2-related schwannomatosis (NF2-SWN)?
🎥 Watch this episode of Big Questions about NF: youtu.be/5sDSfyFxMYw
#NF2SWN #Neurofibromatosis #BigQuestionsAboutNF #RareDisease #ChildrensTumorFoundation #EndNF #NF2
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26 Mar 2025
Big congratulations to @AdamPJones98 on this exciting publication - amazing work by everyone involved, and great to see the progress in #NF2SWN research! 🧬🧬👏
@SNOMAN_Lab
26 Mar 2025
Proud to announce my paper investigating the #SpatialBiology of vestibular schwannomas in #NF2SWN is out at @NatureComms! Thank you to everyone involved and @nf2biosolution1 for funding this work to support the use of #Immunotherapy for NF2 SWN! 🧑🏻🔬
nature.com/articles/s41467-0…
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26 Mar 2025
Proud to announce my paper investigating the #SpatialBiology of vestibular schwannomas in #NF2SWN is out at @NatureComms! Thank you to everyone involved and @nf2biosolution1 for funding this work to support the use of #Immunotherapy for NF2 SWN! 🧑🏻🔬
nature.com/articles/s41467-0…
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Meet the individuals living with NF2. A rare disorder affecting around 1 in 35000 people across the world.
Today we meet Hannah, her NF2 journey started aged 14. Hannah has suffered severe, life changing side effects from Avastin infusions.
#endNF2 #NF2awareness #NF2SWN
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29 Jan 2025
Continuing our midweek knowledge today,
All about eye issues and we are at serious risk of developing several issues.
Do have a read
Photo credit NF2 Information & Services
#endNF2 #NF2awareness #neurofibromatosistype2
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #NF2SWN
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28 Jan 2025
Midweek knowledge!
Learn about fertility issues caused by treatments for NF2-SWN. We have a 50% chance of passing NF2 on (can be less if you are mosaic). Seek advise from professionals and your clinic
Photo credit @NF2_IS
#endNF2 #NF2awareness #NF2 #NF2SWN
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27 Jan 2025
This is a picture of all the nerves in your body, quite spooky eh?
Imagine a disorder where tumours could grow on any of those nerves in the picture...
THAT IS NF2
Scary reality
#endNF2 #NF2awareness #NF2Schwannomatosis #NF2SWN
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
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26 Jan 2025
Make sure you dont miss all the posts in February as we bring back our campaign "How does NF2 Affect me" and facts about rare diseases!
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
#nf2charity #nf2cure #NF2SWN
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10 Jan 2025
Its Friday Facts again. Each friday we will be issuing facts about NF2..... want to join in then send us your fact!
#endNF2 #NF2awareness #neurofibromatosistype2 #NF2SWN
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
#nf2charity #nf2cure #nf2treatment #nf2gene
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Midweek knowledge!!
Did you know you schwannoma can grow on any one of these nerves, We usually talk about the vestibular nerve but they can grow on any nerve and cause proiblems,
#endNF2 #NF2awareness #neurofibromatosistype2 #NF2SWN
#NF2support #nf2 #nf2family #nf2warrior
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Today we see the return of our Friday Facts series. Each friday we will be issuing facts about NF2..... want to join in then send us your fact!
#endNF2 #NF2awareness #neurofibromatosistype2 #NF2SWN
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
#nf2charity #nf2cure
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19 Dec 2024
Today we celebrate all our volunteers & supporters and thank them for everything they do or have done this year.
We are a very small charity and none of us get paid but we fight NF2 with a passion with the aim of a better future for all of us.
#endNF2 #NF2awareness #NF2SWN #NF2
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We are starting midweek knowledge, we will share a posts about NF2 and, how it can affect us.
There were so many possible mutations, so much variability with NF2. Thats why @NF2BioSolutions are exploring many different therapies!
#endNF2 #NF2awareness #NF2SWN
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10 May 2024
Vanessa Merker, PhD Frank Buono, PhD will present updates on their most recent project, which will develop a new patient-reported measure of quality of life in people with NF2-related schwannomatosis.
Live captions will be available
ctf.org/may22 #endnf #nf2swn #nf2
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18 Mar 2024
Welcome to Sign Language Awareness week #SLW2024 with a message from Charity CEO, Clare Goddard.
We'll be sharing posts from other organisations this week & we're hoping to get a fingerspelling video to you!
#SignLanguageWeek #BSL
#endNF2 #NF2awareness #NF2SWN
#NF2support #nf2
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I was delighted to be interviewed by our friends over at @NfPatients after i was nominated as their "Heroine of the month".
A fitting day (#IWD2024) for the interview to be published which was about my hearing loss journey since diagnosis. #NF2 #NF2SWN
nf-patients.eu/magazine/hero…
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