Lay summary
Rare disorders (RD) are classified as low-prevalence health conditions. However, 6% of the worldwide population has a diagnosed RD; this reflects the prevalence of RD in the community in Aotearoa. The burden of having a rare disorder is high, resulting in concomitant disability and additional health service needs. There is a shortage of research exploring the needs of those with RD when accessing healthcare in Aotearoa.
In partnership with Rare Disorders New Zealand, this activation grant will (1) create scoping reviews exploring healthcare and RD; (2) explore the use of inclusive and novel research designs, such as photovoice; (3) activate a RD research strategy network and develop a research strategy for RD.
This project will explore current knowledge and inclusive research designs, create research partnerships, and contribute to future grant applications that address healthcare access challenges, informs policy, and support excellent clinical care provision for those with RD in Aotearoa.