Rare Disorders NZ teams up with Whānau Āwhina Plunket to improve early identification of rare disorders in children
Well Child Tamariki Ora nurses have an important role to play in the early years of children in New Zealand. Through their regular health assessments of babies and toddlers they are best placed to notice signs and symptoms in children that might need further assessment. Caregivers and whānau place a lot of trust in these early visits and assessments for peace of mind that their tamariki are developing as expected, and that anything of concern will be picked up.
With over 70% of rare disorders being genetic in origin, the majority are present at birth. While some might not present symptoms for years to come, others will from an early age, and the sooner a rare disorder is picked up and diagnosed, the sooner a child can be referred to specialists and receive the appropriate care and, where possible, treatment.
With this in mind, Rare Disorders NZ and Whānau Āwhina Plunket teamed up to design a course for Plunket nurses called Supporting whānau who experience rare disorders in Aotearoa. The course aims to upskill Whānau Āwhina staff in the early identification, referral and support of affected whānau with rare disorders.
The course will be rolled out as an available educational resource for all Well Child Tamariki Ora providers.
It is hoped that this initiative will improve early identification of rare disorders in children, and ensure that children and their whānau receive the right support on their journey of managing their disorder.