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Illuminating the heroes of rare diseases 27th February 2021 ANTARA/Business Wire Australian health advocates join global movement to raise awareness for Rare Disease Day – Sunday 28 February Sydney (Antara/Business Wire)- With a mission of empowering the rare disease community, Illumina has today partnered with medical researchers and families to highlight the importance of genomic sequencing and to shine the spotlight on the 300 million people worldwide living with a rare disease. Rare Disease Day is an annual event working towards equitable access to diagnosis, treatment, health, social care and opportunity for people living with a rare disease. In Australia, there are around 2 million people living with a rare disease – 400,000 of which are children. ....
Immune Deficiencies Foundation Australia executive officer Carolyn Dews. It’s an opportunity to recognise that people who look normal may be living with chronic health conditions, says Immune Deficiencies Foundation Australia chief executive Carolyn Dews. “Those people require ongoing health treatments and medications and often their quality of life is impacted,” she says. For a disease to be considered rare it must affect no more than five out of 10,000 people, says Carolyn. For some sufferers, they’re able to live a pretty normal life, but for other, she says: “They have constant symptoms, which could be chronic fatigue. This means they would be unable to function properly in a work or home setting.” ....