The squeakiest wheel gets the most oil...
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 the Therapeutic 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!
Belgium, Denmark, Europe, France, Germany, Greece, The United States, Italy, Netherlands, Canada, New Zealand, Spain, Sweden, Taiwan all have National bodies to support rare diseases.
Australia has no coordinated approach to rare conditions!
Please help us make this a priority for our government.
..and circulate this web page to create a voice for those who often cannot speak for themselves.
"A rare disease is only rare if its not happening to someone you love" - Elle McPherson (SMILE Foundation)