Media release: Rare Disease Day Awards
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:
· LIFETIME ADVOCACY AWARD – LADY GILLIAN DEANE
“Gillian is a pioneer in health support in New Zealand and is a staunch advocate, parent and philanthropist.” Nominator
· RESEARCH AWARD – ASSOCIATE PROFESSOR MERVYN MERRILEES
“Professor Merrilees has walked alongside lymphangioleiomyomatosis (LAM) patients and their families for decades.” Nominator
· HEALTH PROFESSIONAL AWARD – DR DIANNE WEBSTER
“She’s my hero in all of genetics when it comes to having made a difference.” Nominator
· PATIENT ADVOCACY AND SUPPORT AWARD – ALLYSON LOCK, POMPE NETWORK
“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
· FUTURE CHAMPION AWARD – BRITTANY VINING
“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.