WHY?
ALONE WE ARE RARE,
TOGETHER WE ARE STRONG
Rare Friends is a community of supporters for Far North Queenslanders affected by rare conditions. Once a year, on the last Sunday of February we walk, ride and run to support locals affected by rare disease and commemorate International Rare Disease Day.
WHAT IS A RARE DISEASE?
A condition (disease, syndrome or disorder) is classed by the European Organisation for Rare Diseases as rare if it affects less than 1 in 2000 people. In Australia theTherapeutic Goods Authority describes something as rare if it has a prevalence of 1 in 10,000 people or less.
There are approximately 8000 known rare diseases, collectively affecting 6-10% of the population. Rare diseases have the following common features;
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Most begin in childhood (usually diagnosed in children aged < 2years) and continue throughout life
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Obtaining a definitive diagnosis is often difficult and delayed creating great stress for those involved
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Many rare diseases have no cure and some can be prevented
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Neurological & intellectual disabilities occur in about 1/2 of all cases
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Families experience isolation, psychological and financial stress
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Health professionals have inadequate access to information, education and resources
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35% of deaths in children aged < 1 year are due to rare diseases
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~10% of deaths in children aged between 1 and 15 are due to rare diseases
Research, awareness & money are understandably directed at more common diseases & disorders. Collectively, rare diseases are as common as diabetes- which has been described as a National Epidemic!
