3.4K
NFHey DC! We are fired up and ready to meet our representatives to advocate for neurofibromatosis!
#neurofibromatosis #nfawareness #nfnetwork #connectingnf #nfadvocates
@nfnetwork
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279
NFNF is a condition …. not a limitation.
Today we raise awareness.
Not for sympathy.
For understanding
#nfheroes #NFWarriors #nf1 #awernesss #neurofibromatosis
@nfheroesjourney
1.7K
NFThe NF Ambassadors have spoken: we need a faster diagnosis for NF patients in Europe! 💙
Ana Lages from Portugal grees: The journey to a diagnosis is still too long. She’s raising awareness and fighting for change!
👉 Support NF Patients United and help make earlier diagnosis a reality.
@nf_patients
467
NFLiving with NF1 isn’t always easy…
but heroes don’t quit. 💪💚💙
#NF1 #nfheroes #NFWarriors #nf #neurofibromatosis
@nfheroesjourney
640
NFMe included.
Until it happen to me I took everything for granted.
Anyone could be living with an undiagnosed condition.
You are not special or immune.
Your life could change over night, trust me.
We need to shed a light on all rare diseases.
The sad reality is, nobody will fund us as there’s no money to be made.
Nobody cares until it’s them.
#endnf2 #nf2 #neurofibromatosis #endnf
@nf2.arch
516
OU#rarediseaseday #endnf #neurofibromatosis #nfhero #nf1
@our_nf_story
786
NFTo end our Rare Disease Day, we thank all those affected by NF2 who have shared their stories with us over the last 2 years. We are s grateful you have trusted us and helped us raise awareness of NF2. This is just a snapshot of a few of you!
If you would like to share your story for this campaign you can email us at joanne@nf2biosolutions.org
We are thankful to every single one of you that has gotten us to where we are today, simply we cannot do it without YOU!
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support nf2 nf2family nf2warrior LetstalkNF2
nf2charity nf2cure nf2treatment
@nf2biosolutionsuk
327
NFWe are looking back at the amazing fundraising over the past few years every Friday in our "Fundraiser Friday" posts.
Check these out of you are looking for inspiration to raise funds for NF Awareness month and NF2 Awareness day (22nd May)
In this video we shine a light on Emmas zumba, Charlie and Andys ultra marathon, Jo's charity evening, Nicks triathlon, Pete's trip to Machu Pichuu, Lisas Oxford marathon, Kerrys Wolf run, Another plant sale for Jo & Oscar, Cathys coffee and cake morning, Jackies golf day, Oscars collection bucket, Johns coast to coast bike rise,
Feeling inspired? Check out the hub for your fundraiser -https://www.peoplesfundraising.com/hub/nf2-biosolutions-uk
Want to take part in the Big May 5K ?
Register here -- https://forms.gle/bBULY6wHHH7LYqCu5
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
#nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2
@nf2biosolutionsuk
290
STRare Disease Day spotlight:
Neurofibromatosis Type 1 (NF1) — a genetic condition that causes tumors to grow on nerves.
Today I’m using my platform (and my ducks!) to help raise awareness and support the NF community.
Small ducks. Big purpose. 💙💛
#RareDiseaseDay #NF1 #EndNF #NFAwareness #neurofibromatosis
Part 2 on Neurofibromatosis
@stevezduckz
576
SOI’ve been sharing parts of my journey living with NF1 and the support has meant so much to me.
So I wanted to create #nf1diaries a space where anyone whose life is touched by NF1 can share their story.
If NF1 is part of your life, feel free to share your journey using #nf1diaries and tag me so I can support you too 💚
@nervetumoursuk @nf_patients @nfaireland @nfendurance @nf1.navigator @nfheroesjourney @nfnetwork @nfwarriors @nf1_project @leicestershospitals
#nf1 neurofibromatosis #yourstory #raisingawareness
@sophie_mulla
1.8K
NFVoices of NF2: Where I’ll be sharing the real stories of people living with Neurofibromatosis Type 2 (NF2).
I wanted to kick things off….
NF2 changed my life completely.
At 30, I was playing football, working, and living normally. But I started noticing things weren’t right. My legs felt unsteady, I was losing balance in the shower, and suddenly I struggled to hear people at work.
I kept pushing for answers.
Eventually that led to an MRI of my brain and spine.
In 2024, at 33, I went to what I thought was a routine appointment. Instead, the doctor showed me tumours in my brain and two compressing my spinal cord at C1–C2.
Overnight, everything changed.
The future I imagined suddenly felt uncertain. I even remember thinking: who would want to marry a guy with a future like this?
Then I did what many people do… I Googled NF2.. and yeah I was already past my sell by date!!! 💀
But what I’ve learned since is that much of the information online is outdated. Medicine and technology have advanced enormously, and many specialists now believe NF2 could potentially be cured if the right research funding existed.
It took me more than a year… lots of therapy… to come to terms with my diagnosis. I had to mourn the person I was.
But I also believe I’ve become a stronger version of Michael.
I no longer take a single day for granted.
I don’t know what the future holds… whether my tumours will grow or if I’ll face major surgeries.
But I do know this:
People with NF2 deserve to be seen, heard, and understood.
That’s why I created this page.
You should probably unfollow now if this bores you because I’m never shutting up.
Voices of NF2 is about sharing real experiences, raising awareness, and reminding people they are not alone.
Because every child deserves a childhood.
And every person with NF2 deserves a future.
Thank you for being here.
#endnf2 #nf #nf2
@nf2.arch
100
KOPlease see full Prescribing Information, including Patient Information, in the highlights section @koselugo_selumetinib and at https://link.alxn.com/koselugoUSPI.
In honor of Rare Disease Day 2026, we’re celebrating our STARs! Natalie is a proud mom to Kamie, who is living with neurofibromatosis type 1 (NF1) plexiform neurofibromas, also known as plexiforms. Together, they show us that NF1 doesn’t define their family and that there is always hope, wherever you look for it.
@koselugo_selumetinib
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