Venues across NZ lighting up red for World Haemophilia day

Kia ora,

On April 17 each year, people and member organisations worldwide celebrate World Haemophilia Day to increase public awareness of haemophilia and other inherited bleeding disorders.

This year multiple venues across NZ join others worldwide in lighting up red for World Haemophilia Day. These include Auckland’s Civic Theatre and Town Hall, Christchurch’s Airport buildings and Fanfare Sculpture, Dunedin’s Municipal Chambers and Railway Station, the Palmerston Nth Clock Tower, and several spaces in Rotorua’s city centre. Last year over 70 such landmarks decided to light it up red worldwide, including Moscow’s Ostankino Tower, Niagara Falls in Canada, and Trafalgar Square in London.

The Haemophilia Foundation of NZ (HFNZ) are holding their National Family Camp in Rotorua during the week that includes World Haemophilia Day. This will be a great opportunity for HFNZ members, particularly the children, to see that they are supported and visible.

HFNZ President Deon York will be appearing on RNZ’s Nine To Noon show on April 17 to talk about World Haemophilia Day, bleeding disorders in NZ, new treatments, and the role of HFNZ.

The WFH say, “One of the objectives of the “Lighting it up red” campaign is to create visibility for people living with a bleeding disorder so that they know that the WFH and their peers are there for them. The event is also for those who may not be aware of our community—for those who do not have a diagnosed inherited bleeding disorder. To that group of individuals, “Lighting it up red” is an invitation to find out more about World Hemophilia Day and inherited bleeding disorders. It’s also an opportunity for them to learn about the fact that many people have an inherited bleeding disorders and are not diagnosed, or live with one and don’t have access to care.”

For HFNZ, World Haemophilia Day is also an opportunity to recognise all the support and care people with bleeding disorders get from those around them.

Sufferers of inherited bleeding disorders like Haemophilia, access a significant amount of their care, support, and advocacy through extended families, which come in many forms, as well as medical teams, friends, and colleagues. These communities share the ability to come together and help improve people’s lives.

HFNZ Chief Executive, Sue Ellis, said: "A lack of public awareness of bleeding disorders means that families and friends must often take on a great deal of responsibility for their friends and loved ones, and this very often goes unnoticed. World Haemophilia Day is for people with a bleeding disorder to raise awareness of their condition, and to simultaneously give a very special thank you to their biggest supporters."

HFNZ President, Deon York, said: "World Haemophilia Day is an opportunity to celebrate the inspirational individuals, committed healthcare professionals, and families living with the impacts of a bleeding disorder."

Over 450 people in New Zealand have haemophilia, a genetic condition that can cause bleeding into joints and muscles, and results in very painful symptoms that, over time, can damage joints. Many more people have other inherited bleeding disorders, like von Willebrands disease. HFNZ provides support to over 1000 people with bleeding disorders and their whānau across New Zealand.

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