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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 52m

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves, it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 12/10/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves, it is truly life changing. Learn more at curenf2.org. NF2 is for LIFE NF2 is LIFE CHANGING #endNF #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 10/10/2026

Today 10th October is World Mental Health Day. We have been talking a lot recently about awareness of our mental health with a rare & NF2 Diagnosis. A day to talk about mental health. To show everyone that mental health matters. And let people know that it’s okay to ask for help. #itsokaytonotbeokey

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 08/10/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 06/10/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 05/10/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — and it can be truly life changing. Learn more at curenf2.org. #endNF2

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 01/10/2026

Something exciting is coming in 2027! There is no better time to support our charity and our mission! Fix the Gene Change lives! We are putting the FUN into fundraising with an opportunity for you to join us in raising funds where-ever you are in the country. Repost and Share #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 30/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves. it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 29/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 28/09/2026

*** FUNDRAISING NEWS *** This October, our very own Clare is getting her trainers on again to raise funds for Cure NF2 Foundation. Running in honour or her family Scott, Olivia & Zac who all live with NF2. Support Clare here: www.peoplesfundraising.com/donation/cla... #endNF2 #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 27/09/2026

Its sunday on the blog! And we are back with the latest update from Avastin Diaries, so grab a cuppa and have a read. curenf2.org/avastin-diar... Tshirt courtesy of @nf2.arch - check out the new stock at fcuknf2.bigcartel.com #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 26/09/2026

Join our new podcast script "In Our Shoes: NF2 and Me" If you live with NF2 and feel comfortable answering a few questions about your experiences, your insight could help shape something meaningful To take part msg or you can email me joanne@curenf2.org #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 25/09/2026

Come and join us at our Virtual Coffee Meet and meet other NF2ers. (carers/family welcome) Date: Tuesday 13th October 10.30am BST Have a chat, say hi or just enjoy the company - the choice is yours Sign up here: forms.gle/Uq97GQJTy83G... Guest speaker Katherine a yoga instructor #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 24/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 23/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 22/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 21/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 20/09/2026

We are celebrating one of our incredible fundraisers today We are so very thankful to the TGC Ladies Captains Charity Day and our supporter Cathy Baglin who nominated us as their beneficiary of this wonderful event The team raised over £1031 #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 19/09/2026

Our supporter Helen Bray who lives with NF2 is organising a charity evening with the one & only Dan Patchett as Michael Buble Where: Otley Social Club, Otley, LS21 2DP When: Friday 6th November 2026 Get your tickets here ----> www.ticketsource.com/otley-social... #schwannomatosis #NF2support #nf2

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 18/09/2026

Our message is simple. Amplifying our mission to: Fix the Gene, Cure NF2, Change Lives Join Us in achieving this. Donate here: www.peoplesfundraising.com/donation/nf2... or (USA/Canada/Europe) curenf2.org/donate/ #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 17/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 16/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 15/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 14/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 11/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 10/09/2026

Join CamRARE on Wednesday 7 October for a packed programme of talks, panels and interactive workshops at #RAREsummit26 - exploring policy, care, health data, partnerships and innovation. 📍 In person or online 🎟️ Programme & tickets: www.camraredisease.org/raresummit26... #RAREsummit26 #RareDisease

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 10/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 09/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves. it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 08/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — & it can be truly life changing Learn more at curenf2.org. #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 07/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — and it can be truly life changing Learn more at curenf2.org The impact is very real. #endNF2 #NF2 #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 06/09/2026

NF2 related schwannomatosis affects everyone differently. It’s a genetic condition that causes tumours to grow on nerves in the brain, inner ear, spinal cord, or peripheral nerves — and it can be truly life changing. Learn more at curenf2.org. #endNF2 #NF2 #NF2Schwannomatosis #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 04/09/2026

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 01/09/2026

We are not after your money here!, we just want a nomination so that our charity is in with a chance of winning a £1000 donation with the Movement for Good Awards. Nominate us here: movementforgood.com/draws/1000 Charity Name: NF2 BIOSOLUTIONS UK Charity Number: 1189618 please repost #ENDNF2

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 29/08/2026

Come and join us at our Virtual Coffee Meet Date: Thursday 17th September 10.30am BST Sign up here: forms.gle/5omqnzgC7odo... Guest speaker - Rachel Blomfield is a nutritionist and will be talking to us about Anti Inflammatory Diets. disclaimer We are NOT giving Medical Advice. #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 28/08/2026

Our message is simple. Amplifying our mission to: Fix the Gene, Cure NF2, Change Lives Join Us in achieving this. Donate here www.peoplesfundraising.com/donation/nf2... Behind every diagnosis is a person, a family, a fight, read our journeys here: curenf2.org/patient-stor... #endNF2 #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 24/08/2026

Behind Every Diagnosis Is a Person, a Family, a Fight These are not case studies. They are real people children, parents, friends, warriors — living with NF2-related schwannomatosis. Their stories are the reason Cure NF2 Foundation exists. Read here curenf2.org/patient-stor...

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 22/08/2026

Who might you bump into at CamRARE’s #RAREsummit26 on 7 October? Researchers, clinicians, innovators, patient groups & people with lived experience will come together in Cambridge and online. Network over coffee, at posters, stands & in meeting booths raresummit26.eventbrite.co.uk?aff=mediapar...

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 18/08/2026

Brain Tumours in NF2 generally include benign (non‑cancerous) brain tumours - BUT these can still have serious effects because they grow inside the skull and press on important brain structures. NF2 Is for life, its life limiting, you have no choice but to keep on going. #endNF2 #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 14/08/2026

Our message is simple. Amplifying our mission to: Fix the Gene, Cure NF2, Change Lives Join Us in achieving this Donate here: www.peoplesfundraising.com/donation/nf2... Behind every diagnosis is a person, a family, a fight, read our journeys here: curenf2.org/patient-stor... #endnf2 #schwannomatosis

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 09/08/2026

We are delighted to announce that we are included in the new Rare Map from @LifeArc and @Rare Disease Research UK. The UKs first directory of rare disease organisations. To find out more about Rare Map visit raremap.co.uk #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #nf2

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 31/07/2026

Our message is simple. Amplifying our mission to: Fix the Gene, Cure NF2, Change Lives Join Us in achieving this. Donate here: www.peoplesfundraising.com/donation/nf2... Behind every diagnosis is a person, a family, a fight, read our journeys here: curenf2.org/patient-stor... #endNF2 #NF2awareness

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 23/07/2026

CamRARE's #RAREsummit26 is going global! Can't make it to Cambridge on 7 Oct 2026? Join online with live-streamed talks, networking, a virtual exhibition and posters via Swapcard, interactive Q&A and polls via Slido Tickets: raresummit26.eventbrite.co.uk?aff=mediapar... #RAREsummit26 #RareDisease

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 21/07/2026

CamRARE’s #RAREsummit is back for 2026 and we’re excited to be media partners! If you work across rare science, healthcare, research, innovation, policy, funding, advocacy or live with a rare condition, this is the place to connect, collaborate and drive progress Join us 7 Oct 2026. #RAREsummit26

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Cure NF2 Foundation UK & Europe @nf2biosolutionsuk.bsky.social · 19/07/2026

Behind Every Diagnosis Is a Person, a Family, a Fight These are real people writing about living with NF2-related schwannomatosis. Read our blogs, everything from Avastin Diaries , NF2 science, fundraising and patient experiences and more curenf2.org/uk-europe/cu... #schwannomatosis

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