Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement and awareness of the common challenges faced by people living with a rare disease, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework. We want inclusion of patients and clinicians in decision-making processes, consideration of a wider definition of patient quality of life, and impact of rare disorders for carers.

In New Zealand a shift in mindset is needed for rare disorders to stop being considered in isolation, and instead to be regarded as a significant factor within health policy frameworks. This is in alignment with the global rare disease movement headed by Rare Disease International in its quest for universal health coverage.

New Zealand lags far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. Australia announced support of a national plan for rare disease patients in late 2018, ensuring that no one is left behind. New Zealand needs inclusive policies which acknowledge barriers for the thousands of vulnerable children, adults and their caregivers who continue to fall through the cracks. We need to end the “postcode lottery” to ensure all people living with rare disorders have access to the best healthcare.

Rare Disorders NZ has identified seven strategic priorities and is leading the call for the development of a New Zealand National Rare Disorder Framework to ensure equitable healthcare for all people living with a rare disorder:

• Early and accurate diagnosis of rare diseases

• Coordinated and integrated pathways for cohesive healthcare

• Implement simple mechanisms to ensure appropriate access to disability and social supports

• Equitable access to modern rare disorder medicines through a specific assessment pathway

• Coordinated and funded programme of research for rare disorders

• Capture relevant data on rare disorders in New Zealand

• Planned training on rare disorders for health professionals and support staff

“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.”

[Statement from UN Development Programme Administrator and former New Zealand Prime Minister Helen Clark to the International Conference on Rare Diseases & Orphan Drugs, Cape Town, 20 October 2016.]

– all content courtesy Rare Disorders NZ (www.raredisorders.org.nz)