• Rare Disease Day 2009
• Rare Disease Day 2010
• Faces of rare disease

Join a petition to create an Australian body for rare conditions

Help create a register for rare conditions

Enquire about 2010 Rare Disease Day

A condition (disease, syndrome or disorder) is classed as rare if it affects less than 1 in 2000 people.

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.

The SMILE foundation is working to engage government & take on the responsibility of Australia's National Body. Check out their fantastic site to see what they are doing to help. 

"A rare disease is only rare if its not happening to someone you love" - Elle McPherson