Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder.
Despite the low prevalence of each rare disorder, collectively they affect many families, with 1 in 17 people living with a rare health condition – more than those diagnosed with diabetes.
Lizzie was born in 2003. She has a genetic rare disorder, 22q Deletion Syndrome, which leads to heart abnormalities, weakened immune system and developmental delays.
Sue, on behalf of Rare Disorders NZ, has launched a Parliamentary Petition seeking essential systemic changes that would benefit everyone within the rare disorder community, and wider society as well.
Check out Denise Crompton’s classic: “Diagnosis: Rare Disease” – the story of 13 families with children suffering from a rare disease and how they’ve handled those life experiences.