Rare Disorders NZ has made a submission to the Minsitry of Education's Highest Needs Review.
Assessment for support must have understanding of the wide range of potential rare conditions and the complexity of challenges that this may present in the child. Obviously it is unrealistic to expect someone to know all rare disorder types, however, it is feasible to expect a basic awareness and understanding of rare disorders as a community. This will lead to improved outcomes for the children and stop some falling between the gaps. For example, when there is a complex case, which may not even have a diagnosis (average of 5yrs to gain a diagnosis) there is flexibility to include the voice of the parent or caregiver, medical specialists, or child's physician to ensure clear understanding of the specific needs.