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Rare Disease Day 2016

written by

Leukaemia Care, Charity

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Tomorrow (Monday 29th February 2016) is Rare Disease Day, a day dedicated to raising awareness of rare diseases and the impact they have on patients’ lives.

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.

This Rare Disease Day, join us in raising awareness of the signs and symptoms of blood cancers by:


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 outcomes for patients, and we want to change that. At Leukaemia CARE, we launched an early diagnosis training course in partnership with the The Royal College of General Practitioners. 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.

You can also watch the official Rare Disease Day video here