Media release: A unique beer for a sobering problem
11 Feb 2020
Craft beer fans in Wellington and Auckland will have the chance to experience a very special brew for Rare Disease Day at the end of the month.
Rare Disorders NZ and award-winning brewers Fortune Favours have teamed up to create a unique beer to raise awareness of the 300,000 New Zealanders living with a rare health condition.
“It’s awesome to have the support of Fortune Favours to create a beer that can bring people together, as travelling this journey of rare disorders is isolating, exhausting and frustrating,” says Graeme Swan, who took part in the brew day with his wife Nicola. Graeme and Nicola’s youngest son James died of an undiagnosed rare disorder at the age of five.
The brew day took place in mid-January, with members of the rare disorder community working alongside Head Brewer Dale Cooper and his team. Together, they have created a special beer with a unique colour and flavour that all beer fans will enjoy.
“Inspired by the great work of Rare Disorders NZ, Fortune Favours has brewed 'The Rare Beer'. We have used unusual and rare ingredients like butterfly pea flower and blue raspberry to create a very unique brew,” says Dale.
Another special aspect to ‘The Rare Beer’ is the tap badges, which feature a kingfisher from the Rare Disorders NZ logo, and will be coloured in by people living with rare disorders so each badge will be unique.
Rare Disorders NZ Chief Executive Lisa Foster was also involved in creating this beer, adding ingredients to the brew tanks and learning about the process.
“Buy a pint, spare a thought and spread the word that Rare is Everywhere,” says Lisa. “A donation from each beer will go to our organisation to help us continue to improve the wellbeing of people living with a rare disorder and their whanau.”
Humphrey Hanley, who lives with a rare skin condition called epidermolysis bullosa, says “it’s awesome to have the support of Fortune Favours to help raise awareness of rare diseases as well as funds for this invaluable organisation.”
Rare Disease Day takes place annually on the last day of February, and is a global day of recognition for this community. Worldwide, 300 million people are affected by a rare disease.
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