About the day

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Rare Disease Day takes place on the last day of February around the world and is an annual celebration and fundraiser for people with rare disorders and their families/whānau.

Rare Disease Day 2018 is an important opportunity to raise funds for those support groups in the community whose hard work often goes unnoticed. Supporters all around the country will be organising fundraising events. If you are keen to get involved, check the NZ Rare Disease Day Facebook page for details of events that you can contribute to. Or you can organise your own event – and don’t forget to share your event with us so we can list it on this website.

Find out how other countries are celebrating Rare Disease Day.

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Why is Rare Disease Day important?

  • There are more than 7000 different rare diseases affecting 8 percent of the population. If evenly spread, 1 in 12 households would be affected by a rare disease.
  • 80% of rare diseases are genetic in origin and thus are present throughout a person's life even if the symptoms do not immediately appear.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with a rare disease will not live to see their 5th birthday.
  • A day focused on rare diseases can bring hope and information to people living with rare diseases, their carers and their families.
  • Rare disease patients are often the orphan of the health system, sometimes without a diagnosis, without effective treatment or without research.

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History of Rare Disease Day

Rare Disease Day began in Europe on 29 February 2008. Originally, the intention was to celebrate the day every four years on Leap Day, but the momentum and enthusiasm for the day grew until it became an annual celebration – with events taking place around the globe.

In February 2010, New Zealand got involved, thanks to the initiative shown by the DEBRA New Zealand support group, who carried the flag for all rare disease groups in New Zealand. DEBRA arranged for the Vodafone Warriors to back the cause who committed to supporting rare diseases in New Zealand.