Fair for Rare: Collette's editorial
Did you know that there are an estimated 350 million people worldwide living with rare disorders? One of the significant health challenges of our time, between 5,000 and 8,000 rare disorders have been identified and while uncommon individually, as a group they affect 8% of the global population. This ‘paradox of rarity’ presents unique problems for not only the affected individuals but for caregivers, researchers, policymakers and industries.
February 28 is Rare Disease Day, an international event created to celebrate and improve awareness of this significant global health issue. To mark the event here, we’re sharing the stories of four people – Sarah, Preston, Jethro and Evie – who are but a few of the 377,000 New Zealanders that experience the challenges of a rare health condition. Please read their stories as they are all unique, but share common challenges including diagnosis, treatment and ongoing care.
How can you help? We’re asking all our supporters to Share for Rare and host a tea party to raise money for NZORD and the rare disease community. It’s easy and it’s fun so I hope you will consider hosting tea at your workplace or with your friends.
NZORD is the respected voice of rare disorders in NZ and is committed to systemic change so that Sarah, Preston, Jethro and Evie’s journeys (and the thousands like them) are a little easier.
Dr Collette Bromhead