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;
Most begin in childhood (usually diagnosed in children aged < 2years) and continue throughout life
Obtaining a definitive diagnosis is often difficult and delayed creating great stress for those involved
Many rare diseases have no cure and some can be prevented
Neurological & intellectual disabilities occur in about 1/2 of all cases
Families experience isolation, psychological and financial stress
Health professionals have inadequate access to information, education and resources
35% of deaths in children aged < 1 year are due to rare diseases
~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!