The inaugural Rare Disease Day Awards have been established to honour and recognise ordinary people who have made a positive impact through patient support, advocacy, research and clinical practice.

“So many people in our communities give their time, energy and skills to help change the lives and futures of people living with rare diseases,” says Chief Executive of NZORD Dr Collette Bromhead.

“We are delighted to have the opportunity to honour these five outstanding individuals for their hard work and commitment.”

The five recipients of the Rare Disease Day Awards 2019:

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“Professor Merrilees has walked alongside lymphangioleiomyomatosis (LAM) patients and their families for decades.” Nominator

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“She’s my hero in all of genetics when it comes to having made a difference.” Nominator

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“She is a tireless fighter for the Pompe community and I truly believe she deserves this Award for all her years of fighting for us.” Nominator

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“Brittany’s commitment to working with people, solving problems and helping families are attributes that will benefit the rare disease community in future.” Nominator

Rare Disease Day is a global day of recognition for people living with a rare diseases that has been held on the last day of February since 2008. There are around 7,000 known rare disorders that collectively affect over 377,000 New Zealanders – around 8% of the population, and more than diabetes.

The Rare Disease Day Awards will be hosted by Her Excellency the Rt Hon Dame Patsy Reddy, Governor-General of New Zealand and Patron of NZORD on Thursday 28 February at Government House.

Learn more about the RDD Awards

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more