The Paediatric Society of NZ/Te Kāhui Mātai Arotamariki o Aotearoa are calling for changes to be made to how New Zealand children with rare disorders are diagnosed, treated and supported.
It is estimated there are 300,000 New Zealanders living with a rare disorder, of which half are children. While there is no official definition of what is considered a rare disorder in New Zealand, the European Union defines a disease or disorder as rare when it affects less than 1 in 2000.
New Zealand lags far behind most OECD countries in supporting people living with rare disorders, and has no government or health system policy or programmes specific to this category of disorders.
Rare Disease Day on 28 February aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Paediatric Society spokesperson Dr Rosie Marks says, “Not only do people living with rare disorders and their whānau have to deal with the daily challenges of their disorder, but they often have to push to get the support they need. Families find this emotionally and financially exhausting, and the Government needs to acknowledge this and take action to help these families.”
“The Paediatric Society supports Rare Disorders NZ’s Fair for Rare campaign which asks the Government to address the challenges faced by people living with rare disorders through the development of a comprehensive and clear plan, or New Zealand National Rare Disorder Framework.
The framework focuses on several priority areas including early and accurate diagnosis, pathways for clinical care, access to disability and social support, training on rare disorders for all health professionals and support staff; and equitable access to modern rare disorder medicines.
“Under a national framework a care plan would be put in place very early in the life of each person with a rare disorder that would co-ordinate the different services they require.
“This co-ordinated care plan is essential to ensure equitable health outcomes for all people with rare disorders and for the whānau that support them,” says Dr Marks.
To find out more about the Fair for Rare campaign visit https://raredisorders.org.nz/fair-for-rare-nz/
For more information please contact Ally Clelland, Communications Manager, Paediatric Society of NZ on 022 044 2161