27/02/2026
Did you know that in Australia a disease is considered rare if it affects fewer than 5 in 10,000 people? That is the official definition. But when you zoom out, the picture is anything but small.
It is not rare to have a rare disease.
While each of the 7,000+ rare diseases are individually uncommon, together they affect around 2 million Australians. That is about 1 in 12 people, a community larger than many well-known chronic conditions.
Muscular dystrophy is classified as a rare disease, with around 30 different variations, all involving muscle weakening and wasting. It affects around 1 in every 1,000 children, and an estimated 41,000 people in Australia are living with muscular dystrophy.
Rare Disease Day, observed globally on the last day of February, is the official international awareness campaign dedicated to rare diseases. Its goal is to shine a light on the realities faced by individuals and families, and to call for greater awareness, understanding and action from decision makers and the wider community.
With more than 300 million people worldwide living with a rare disease, we stand together to advocate for equitable access to diagnosis, treatment, care and social opportunities.
Because rare is more common than you think. That’s why, as an organisation, we are committed to advocating for people living with neuromuscular conditions and championing investment in research that is working towards finding a cure.
