Rare Disorders Month
On International Rare Disease Day – 28 February, Rare Disorders NZ are kicking off the very first Rare Disorders awareness month - calling on Aotearoa to Glow up and Show up for Rare to show support for the 6% of the population living with a rare disorder.
Together we can bring rare disorders out of the darkness, and into the light.
March is Rare Disorders Month, a support period for the rare disorder community where Aotearoa is being called to Glow Up and Show Up for rare.
At Care Pharmacy we’ve been getting stuck into #GlowUpShowUp by participating in the Rare Disorders tattoo campaign.
It’s not rare to have a rare disorder. In Aotearoa, more than 300,000 people live with one of 6,000 rare disorders - that’s similar to the population of Wellington.
As it stands in New Zealand, people living with rare disorders are being neglected in our healthcare system. Unlike most OECD countries, we don’t have a rare disorder strategy. As a country we lack data on many conditions, adequate education of medical practitioners, medicine funding and widespread awareness and support for many patients.
Glow up and Show up for Rare is all about shining a light on the urgent need for action in the Rare Disorders community.
Through highlighting this issue, raising money and maintaining visibility, together we can bring rare disorders out of the darkness, and into the light.
Visit raredisorders.org.nz, or follow @RareDisodersNZ on Facebook, Instagram, LinkedIn and Twitter to see more on how to get involved in Rare Disorders Month.
RDNZ will be marking Rare Disease Day 2023 by launching their new parent and caregiver guide, Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand
This guide has been developed by Rare Disorders NZ to help parents and caregivers navigate the path in caring for a child with a rare disorder in Aotearoa New Zealand.
Check it out below!