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Supporting patients on Rare Disease Day

written by

Leukaemia Care, Charity

  • Man

Rare Blood cancers combined are the fifth most common form of cancer. Approximately, one in 25 people are diagnosed with a blood cancer in their lifetime. However, because there are so many different types of blood cancers, individually, they are actually very rare.

Today (Saturday 28th February), is Rare Disease Day with the main objective of raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.


The symptoms of blood cancers are notoriously vague and non-specific, which can lead to problems and delays in diagnosis. Difficulties arise because symptoms for blood cancer are often confused with everyday illnesses, such as flu. Delays in diagnosis can have a significant impact on the treatment outcome for patients, meaning more must be done to raise awareness of the signs and symptoms of blood cancers to promote greater vigilance amongst the public and quicker diagnosis at primary care level.

With 50,000 GPs in the country and 40,000 new cases of blood cancer each year, individual GPs may only see a handful of blood cancer cases throughout their career.

Impact on lives

A missed or late diagnosis greatly effects the outcome for patients, and we want to change that. At Leukaemia CARE, we are working closely with The Royal College of General Practitioners and are almost ready to launch our early diagnosis online resource for GPs. This tool will support GPs in developing their knowledge about blood cancers, aid them in being able to recognise the clusters of symptoms that could indicate a blood cancer and refer a patient for tests to establish the cause of these symptoms.

Being diagnosed with a rare disease can have a significant impact on a patients’ life, both physically and emotionally. It’s vital these patients have access to support and information to enable them to make decisions about their treatment. At leukaemia CARE, we have a range of support services to ensure that patients, as well as their families, don’t face it alone.

Whether they need a listening ear from our CARE Line team, a buddy to chat to who has been in a similar position, a visit to one of our support groups or good quality, trusted information about a diagnosis, treatment or side effects, we are here for them all.