Rare cancers and the Rare Cancers Act: what it means for you
What is a rare cancer?
There are many different types of cancer. Some are more common than others.
In the UK, around 1 in 4 people diagnosed with cancer each year has a rare cancer.
A cancer is classed as rare when fewer than 6 in 100,000 people are diagnosed with it each year.
This includes cancers such as:
Rare cancers can start almost anywhere in the body. They include:
- certain blood cancers
- some gynaecological cancers
- sarcomas (cancers of muscles, bones, or connective tissue)
- head and neck cancers
There are other types of rare cancer not listed here, including some that people may not have heard of.
Ian, diagnosed with oesophageal cancer
I had this feeling I should go to the doctor. I left it for a couple of weeks and ended up going the doctors over a fever.
I mentioned to the nurse about the weight loss and she said to make an appointment with the doctor.
I had blood tests and a CT scan and they’d picked up something in the chest area. I had a phone call from a professor in Royal Gwent Hospital, Newport. I was in shock to get my diagnosis.
I joined a group on Facebook. The specialist nurses that were dealing with me in the hospital in Cardiff, set up this Facebook page, a private page for those who were going through what I was experiencing. That was invaluable for me to talk with those post-op, hearing that they are still here, they are alive after surgery. That gave me the feeling that I can get through this.
The challenges of a rare diagnosis
People with rare cancers often face challenges that others may not.
These can include:
- delays in getting a diagnosis – it can take longer to identify the particular type of cancer
- less clear treatment guidance – there may be fewer national guidelines
- travelling for specialist care – you may need to visit centres further from home
- limited information – it can be harder to find reliable information
- feeling alone – finding others with the same diagnosis can be difficult
We have information about rare cancers.
Kathy, diagnosed with vaginal cancer
I thought, cancer is cancer, but there's not as much personalised care or treatment things and you don't ever meet anyone with the same, so it can be quite different.
I’ve had a very rare vaginal cancer. I could have had this very slow growing tumour internally for years. I had a one percent chance of having this cancer, very rare indeed. Not the best place to have it either, very embarrassing. I’m very young to have this type of cancer. 75% of women are over 65 that have had this.
It was Stage 3 C by the time they found it.
Because it was really rare. I was like, oh my God, where's this information on it?
Where do you go for support when you've got something really rare? I do feel they should have a rare cancer ambassador at every hospital.
The Rare Cancers Act: what is changing
In March 2025, the Rare Cancers Bill became law as the Rare Cancers Act.
The Act came into force on 5 April 2026.
It focuses on three main areas.
Improving access to ‘orphan drugs’
These are medicines developed for rare conditions.
The Act will review of how these drugs are approved and funded. The aim is to make it easier for people in the UK to access new treatments.
It may also encourage pharmaceutical (drug) companies to bring new medicines to the UK sooner.
Creating a national strategy for rare cancer research
A new National Specialty Lead for Rare Cancers will help guide research.
Their role includes:
- understanding what is holding research back
- working with researchers and charities
- helping to improve coordination of research across the UK
Making clinical trials easier to access
Clinical trials are essential for developing new treatments. But for rare cancers, it can be hard to find enough people to take part.
The Act aims to:
- improve how people are matched to trials
- make it easier to find and join studies
This could give more people access to new treatments.
What this could mean for people with rare cancers
The Act is an important step forward for people with rare cancers.
It could lead to:
- more research and better understanding
- improved access to clinical trials
- a more coordinated approach across the NHS
- clearer national leadership
Change will take time. But this is a positive step towards fairer care for everyone with a cancer diagnosis.
Sophie, diagnosed with thyroid cancer
Being diagnosed with thyroid cancer made me realise just how much such a small organ controls your body every day.
Since having mine removed, the side effects and learning how to manage them have been incredibly difficult to navigate.
From struggling to regulate body temperature to dealing with extreme fatigue and palpitations, the impact is constant.
Managing medication levels, especially alongside other complex health conditions, becomes a delicate balance between treating the illness and preserving your quality of life.
In 2025, I joined my local hospital’s Cancer Champions Committee because I refuse to let this be just my story. Cancer survival is increasing, but survivorship care is not keeping pace. Late effects, complex cases and younger patients are falling through the gaps.
No one should have to fight this hard after fighting for their life.
How Macmillan can support you
Wherever you are in your experience – newly diagnosed, in treatment, or supporting someone. We are here for you.
Talk to someone who understands
Contact our free Support Line on 0808 808 00 00 (7 days a week, 8am–8pm).
You don’t need to have a specific question. You can talk about anything you’re feeling or facing.
Connect with others
Join our Online Community. It has a dedicated rare cancers forum where you can ask questions, share your experience and meet others who understand what you’re going through.
Find support near you
You may find it helpful to connect with others in person. Use our in your area search to find support and activities in your area.
Get information you can trust
Our website includes information on many rare cancers, as well as content on clinical trials, treatment planning, coping with uncertainty, and talking to your healthcare team.
You deserve equal care
A cancer diagnosis may never feel fair. But the care and support you receive should not depend on how common your cancer is.
The Rare Cancers Act shows that this is starting to be recognised. We will keep working to make sure people with rare cancers get the support they need.
Read more about our fair cancer care campaign.
About our information
This information has been written, revised and edited by Macmillan's Digital Content Editor team. Learn more about our Digital Content Editors and how we produce our cancer information.
Accurate information helps you make informed choices. Look for trustworthy, reliable sources such as Macmillan Cancer Support, the NHS and your own healthcare team.
We have more information on how to find reliable health information online and understanding cancer misinformation.
About the author
Ros Ayres
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