A new parliamentary bill supporting research and investment into treatment for rare cancers has become law after being granted Royal Assent.

Spearheaded by Dr Scott Arthur, Labour MP for Edinburgh South West, the new Act uses the definition of a rare cancer from the UK Rare Diseases Framework, meaning a condition that affects less than 1 in 2,000 people.

Advocates hope the bill will help bring hope to those who suffer from these illnesses by introducing a dedicated member of the Government to address delays in funding and development for rarer cancer treatments.

It was passed into law on Thursday (March 5) after years of campaigning by Dr Arthur and cancer care organisations.

The charity Cancer Research says 24 out of 100 cancer diagnoses per year in the UK and EU are of a rare form of the disease.

One of these cancers is Alveolar Rhabdomyosarcoma (abbreviated as ARMS) – a soft tissue sarcoma mostly affecting people aged 10 to 25.

The Margaret Adcock foundation provides financial support to families affected by cancer and also funds research into ARMS due to the passing of the namesake of the charity in June 2023.

The Sarcoma UK Instagram account describes the bill as “a historic moment for people affected by sarcoma and other rare cancers” and pointed out 82 per cent of people don’t get offered places on clinical trials that could lead to breakthrough research.

A historic moment for people affected by sarcoma and other rare cancers

Sarcoma Uk

 

  • Rare Cancers aren’t only just lesser occurring cancers, they can also be cancers that occur in unusual places in the body (Cancer Research UK)
  • any cancer diagnosed in someone young is often deemed as rare, due to how cancer only affects a small number of children (Macmillan Cancer Support)
  • Sarcoma makes up less than 2% of all cancers diagnosed in the UK each year (Sarcoma UK)