On this rare diseases day, we don't need pity or a campaign to raise money, we just want to be acknowledged and for our governments to acknowledge this changing healthcare landscape by properly funding science and research into rare diseases.
Up to 400,000 children in Australia have a rare disease (condition that affects less than 200,000).
My son Nicholas is one of 70 children in Australia with his condition and 1 of 1000 worldwide.
Nicholas has started school this year, at a Special Development School and he is blossoming. His learning needs are severe as he is still non-verbal and has difficulty communicating. But we are kicking some goals as he learns how to communicate his needs to us.