Ocular Melanoma UK

We are a charity aiming to raise awareness and support people affected by ocular melanoma.💙 Contact our helpline on 📞 0300 790 0512

[Ocular Melanoma UK @OcuMelUK]

We're no longer active on X,
but we're still here for you. 💙
Follow us on Facebook and LinkedIn for updates, support, and stories from the OM community:
📘 https://t.co/9RmIfPJHBo
🔗 https://t.co/TqqbBnl51g
Let’s stay connected.
#OcularMelanoma #EyeCancer #OcularMelanomaUK

[Ocular Melanoma UK @OcuMelUK]

@Radiology_UK @NHSEngland @TheChristieNHS @BSIR_News Thank you for always putting patients first and for standing up for those affected by this rare cancer. Your voice in the @NHSEngland review means so much to the people who’ve been fighting for fair access to treatment for far too long.

[Ocular Melanoma UK @OcuMelUK]

After years of campaigning, we’re incredibly pleased NHS England is reviewing chemosaturation treatment.

Huge thanks to the people, doctors & supporters who’ve pushed for this, your voices have truly made a difference.

Gill Dummigan,💯reporting @BBCNews https://t.co/zlJy6kHqne

[Ocular Melanoma UK @OcuMelUK]

@Immunocore https://t.co/2frrqeQhRF

[Ocular Melanoma UK @OcuMelUK]

The SMC has not approved tebentafusp for metastatic uveal melanoma on the NHS in Scotland.

We’re working with @Immunocore, @MelanomaFocus, @SMC_Updates and our members to push for access – just as we did in England.

📞 0300 790 0512
📧 [email protected]

[Ocular Melanoma UK @OcuMelUK]

If you're in Scotland and this decision affects you and your clinician believes tebentafusp could help, they can still request to prescribe it. All Scottish health boards have systems in place for this.
https://t.co/2frrqePK27

[Ocular Melanoma UK @OcuMelUK]

Today is an excellent day! We are incredibly pleased to share the news that NICE has overturned its previous decision and is now recommending that people with metastatic uveal melanoma who are HLA-A*02:01-positive should receive Tebentafusp on the NHS.
https://t.co/cfGHB6BZqU

[Ocular Melanoma UK @OcuMelUK]

@AXAUK @BBCNews @MartinSLewis @GMB @livelifecarol @DelcathSystems We couldn’t agree more. Thank you for sharing this with your network as people with uveal melanoma need our help please treatment to get access to these treatments

[Ocular Melanoma UK @OcuMelUK]

We are also shocked @AXAUK disregarded medical advice.
We’ve been campaigning for AXA to cover claims for #Chemosat after they denied treatment for people with #OcularMelanoma despite good evidence and letters of support from doctors. @BBCNews @MartinSLewis @GMB @livelifecarol

[BBC News (UK) @BBCNews]

Woman with brain injury faced insurance refusal https://t.co/3v0kmAUaSm

[Ocular Melanoma UK @OcuMelUK]

@AXAUK @BBCNews @MartinSLewis @GMB @livelifecarol This shows why we feel patients should receive treatment. https://t.co/0MYk3RtloD
In the trial of 91 people who received treatment, 7.7 had a complete response, 28% had a partial response and 37.4% got stability, which in uveal melanoma, is simply incredible. @DelcathSystems

[Ocular Melanoma UK @OcuMelUK]

Exciting News!
We're thrilled to share that OcuMel UK is evolving into Ocular Melanoma UK!
Our dedication to supporting everyone affected by ocular melanoma remains as strong as ever. Stay tuned for more updates & our refreshed website!

#OcularMelanomaUK #OcularMelanoma #OMUK

[Ocular Melanoma UK @OcuMelUK]

"These friends may not have known what to say, but they certainly knew what to do. A few days before my surgery, they whisked me off to buy the darkest, most glamorous sunglasses with thick arms." https://t.co/NA2Skdl6wW

[Ocular Melanoma UK @OcuMelUK]

“If you turn on the TV,there was no woman,at all,visible,that had an imperfection.There I was in 93 coming out with an #EyePatch having a lazy eye”. @GabrielleUk does the thing she loves,singing!
Life’s tough for our OMies, but we get through & 🤞 have a blast while doing so ❤️

[Sat_James Martin @sat_jamesmartin]

Happy Saturday! Look at these smiles! @jamesmartinchef is back in the kitchen and serving up a feast of delicious food for singer @GabrielleUk, and there are recipes from chefs @CorrigansFood and @NickNairn! 9.30am @ITV

[Ocular Melanoma UK @OcuMelUK]

Glad to see our CEO and @useMYdata member, Jo Gumbs bringing the rare cancer voice to the discussions.

Can AI add value?

Yes, we are sure it can, but we need to do things differently for AI to also help people with #RareCancers.

[Science and Innovation at Cancer Research UK @CRUKresearch]

💡How much added value do AI tools have for patient benefit? Join the debate with our co-chairs @markowetzlab (@CRUK_CI) & patient advocate Jo Gumbs and speakers @CataVallejosM (@EdinburghUni) & @cwcyau (@UniofOxford) at our #CRUKDataConf24 (AB)

[Ocular Melanoma UK @OcuMelUK]

Dad saying 'there's something in my eye' given year to live https://t.co/GLzuWCLyu9
#Chemosaturation #OcularMelanoma

[Ocular Melanoma UK @OcuMelUK]

Patient from Glossop talks to the BBC about fundraising for Chemosaturation.
Craig Shore, a 52-year-old gentleman whose #OcularMelanoma cancer has spread to his liver, requires a ground-breaking treatment called #Chemosaturation.
To read more, click 👇
https://t.co/O3JW6IOv3R

[Ocular Melanoma UK @OcuMelUK]

On #WorldCancerDay2024 we’d like to thank everyone who has supported our OM community.
Together we’ll change the landscape for people with #OcularMelanoma by uniting the wider community, so people receive the support, information, & treatment they need to live well for longer.

[Ocular Melanoma UK @OcuMelUK]

Thank you to everyone who has supported our Cycle Around the World campaign. Your support will allow us to be able to improve the well-being of people with ocular melanoma cancers.😊
https://t.co/g4TYZmwOzu

#Cancer #OcularMelanoma

[Ocular Melanoma UK @OcuMelUK]

Thank you to everyone who has supported our Cycle Around the World campaign. There is still time to join the campaign and help us raise £70,000 to fund our wellbeing programme. Good well-being can decrease the risk of disease, illness, and injury.😊
https://t.co/g4TYZmwOzu

[Ocular Melanoma UK @OcuMelUK]

Will you join our Cycle Around the World campaign, to help us raise £70,000 to fund our wellbeing programme? We aim to help support people with ocular melanoma cancers by giving them the skills to manage relaxation, fatigue and more.
https://t.co/g4TYZmwgJW

#MentalHealth