A rare disease is defined as a health condition that affects 1 in 2000 people or less. There are more than 6,000 rare disorders which affect around 300,000 New Zealanders – half of whom are children.
People living with a rare disorder often have complex needs and face unique challenges. Clinicians also face the challenge of limited awareness, information or connections to specialists with knowledge on rare diseases.
CALL FOR ACTION
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 individual rare disorders to stop being considered in isolation, and instead to be regarded collectively 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 a rare disorder 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 ensure all people living with a rare disorder have access to the best healthcare.
People living with a rare disorder will have improved healthcare and wellbeing through access to diagnosis, medicines and services.
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.
SEVEN STRATEGIC PRIORITIES
Early and accurate diagnosis of rare diseases
2. PLANNED PATHWAYS FOR CLINICAL CARE
Coordinated and integrated pathways for cohesive healthcare
3. ACCESS TO DISABILITY AND SOCIAL SUPPORTS
Implement simple mechanisms to ensure appropriate access to disability and social supports
4. RARE DISORDER MEDICINES
Equitable access to modern rare disorder medicines through a specific assessment pathway
Coordinated and funded programme of research for rare disorders
6. NATIONAL RARE DISEASE REGISTRY
Capture relevant data on rare disorders in New Zealand
7. WORKFORCE DEVELOPMENT
Planned training on rare disorders for health professionals and support staff