Rare Diseases are defined as a condition, syndrome or disorder that affects 1 in 10 000 people or less (The Australian Therapeutic Goods Authority).

Some prevalent statistics about Rare Disease include:

  • There are more than 8000 known rare diseases
  • 80% rare diseases affect children and most begin in childhood and continue throughout life
  • Although each disease is rare collectively they affect up to 10% of the population
  • Neurological and intellectual disabilities occur in about half of all cases regardless of disease type and lead to  loss of independence and opportunities.
  • Obtaining a diagnosis is often difficult and delayed and most have no cures