ROS1ders UK

ROS1ders UK is a patient-led charity focused on improving outcomes for those affected by ROS1-positive cancer across the UK.

We are a UK-based charity dedicated to supporting ROS1-positive cancer patients and improving lung cancer outcomes.

10/06/2026

Big news for ROS1 patients! 🙌

American Society of Clinical Oncology (ASCO) 2026 recently released new data on Ibtrozi, a next-generation ROS1-targeted therapy showing faster symptom relief, better brain health, and improved quality of life for patients.

For those of us in the UK, an application has been submitted to the European Medicines Agency for full approval. UK filings are planned to follow.

The options are growing. The research is moving.

This is why biomarker testing matters.
This is why knowing your ROS1 status matters.
This is why this community matters.

Drop a ❤️ if this gives you hope.@@

09/06/2026

"December 6th, 2025. Six weeks after becoming a dad. That was the day they told me I had lung cancer."

Liver. Bones. A Christmas spent waiting for results, a New Year with a diagnosis, and a body fighting harder than I knew it could.

I'm ROS1 positive, on Entrectinib, and three months in, my tumour is down significantly.

I'm not living scan-to-scan.

I'm living. Full stop.

Detailed story is here: https://ros1ders-cancer.uk/stories/matt/

05/06/2026

Don't ignore the signs.

A persistent cough, breathlessness, or unexplained weight loss could be your body's way of telling you something isn't right.

Knowing all the warning signs of lung cancer and seeking medical advice early can make a real difference. Share this post to help raise awareness and encourage early diagnosis.

03/06/2026

Nearly 1 in 7 new cancer diagnoses in the UK is lung cancer.

That's thousands of people and families affected every year.

Awareness is more than a statistic—it is about education, support, research, and hope for a better future.

Join us in raising awareness and supporting everyone impacted by lung cancer.

01/06/2026

September 2024. Diagnosed with a ROS1 mutation. By the time I started treatment, the cancer had already reached my liver and my bones.

For over a year, Entrectinib held it back. Then, in November 2025, my scans showed the lesions in my liver had grown significantly. My consultant said chemotherapy was the only option left.

Then a friend — an oncologist — told me about a clinical trial at The Royal Marsden NHS. One conversation changed everything.

In January 2026, I started the NVL-520 trial. My March scan showed the cancer had shrunk again.

Without that trial, I would have been moved to palliative care.

I'm sharing this because another ROS1+ patient somewhere has just been told there is nothing left. Ask about trials. Seek a second opinion. There may be more doors than you know.

You deserve to know every option available to you.

Best wishes, Mina 💚

Want to read a detailed story? The link is in the first comment.

29/05/2026

MYTH: Lung cancer only affects smokers.

TRUTH: ROS1+ lung cancer has no known link to smoking. It affects younger people, non-smokers, people with no obvious risk factors — and most of them are diagnosed too late because no one thought to look.

That's why biomarker testing matters. One test at diagnosis can change everything.

If you or someone you love has been diagnosed with lung cancer, ask your doctor:
"Was I tested for ROS1?"

It's a simple question. It could be life-changing.

Share this to spread the word.

27/05/2026

Half of lung cancer patients in the UK never receive biomarker testing at diagnosis.
That means thousands of people are being treated without knowing what is actually driving their cancer.

For ROS1+ patients, this matters enormously. A simple test at diagnosis can identify whether a targeted therapy — not chemotherapy — is the right treatment.

One test. It could change everything.

Share this post so more patients know to ask.

26/05/2026

It's Lung Cancer Hope Month — and we want to hear from you.

What gives you hope right now?

For us, it's this community. The patients who show up for each other. The carers who fight alongside. The researchers who won't give up.

Drop your answer in the comments. We'll be sharing your words all week.

LUNGevity Foundation

24/05/2026

Some good insight on Radiogland therapy 👍

05/05/2026

https://ros1ders-cancer.uk/stories/yoav/

Address

Nottinghamshire

Website

https://ros1ders-cancer.uk/

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Videos

700 Voices. 700 Futures- Every Year 🎗️ Lung cancer has a new face. Every year in the UK, 700 people, disproportionately younger, non-smoking women, are diagnosed with ROS1-positive lung cancer. This isn't a disease of lifestyle; it’s a rare genetic "bad luck" mutation. Because our community is young and healthy, the diagnosis is often a shock, and the challenges are unique: - Less Awareness because we don't fit the "typical" profile. - Less Care & Funding for rare genetic research. - Less Access to the life-saving treatments we need to survive. ROS1ders UK is fighting to ensure that being "young and non-smoking" doesn't mean being overlooked. We are professionals, parents, and friends with everything to live for. Support the 700: ✅ Follow our page to amplify our voice. 💳 Donate to help us bridge the funding gap: Website: https://ros1ders-cancer.uk/donate/ Alternatively, JustGiving page: https://share.google/ZG9gFYBZjzivKeHO7 🔄 Share this to challenge the lung cancer stigma. Your support helps us turn "rare" into "resourced". #ROS1dersUK #700Voices #NeverSmoker #YoungWithCancer #LungCancerAwareness #RareDisease #roycastle #Lungcancereurope #oncodaily #macmillanlung #cr_uk

Catherine Paul Julia Bunting Del DanaherMargie Miles-Elder Michelle Takai @followers Follow ROS1ders UK and stand with us: 🔗 https://x.com/ros1dersuk 🔗 https://www.instagram.com/ros1dersukcancer 🔗 https://www.linkedin.com/company/ros1ders-uk-cancer/ 🔗 https://www.facebook.com/ros1dersuk #RareCancer #RareDisease #LungCancerAwareness #KnowYourBiomarker #GetTested #CancerAwareness #EndCancerInequality #HealthInequality #CancerAdvocacy