Uniting to Be Seen and Supported

Empowering the rare disorder community to feel seen, connected and heard is central to the work Rare Disorders NZ does. As the only national organisation supporting all New Zealanders who live with a rare condition, they provide a central hub for patients and their whānau affected by one or more of the over 6,000 known rare disorders. People can turn to them for information, advice, and support.

There are more people in Aotearoa New Zealand living with a rare disorder than the population of Wellington, yet feeling isolated and invisible are common experiences for those affected. 

“It is incredibly isolating and frightening to feel misunderstood with a complicated, rare and unknown disorder,” shares Rachel Hollwey, one of an estimated 300,000 living with a rare disorder in New Zealand. 

Despite many of these conditions being complex, debilitating, and life threatening, the health impacts are often not visible. Most rare conditions are not commonly known, even amongst health professionals. It can feel like a constant battle for those affected to be heard and understood. Many patients with rare disorders feel quite hopeless and lost in the system.

This year, Rare Disorders NZ launched a month-long campaign called 'Rare Disorders Month' on Rare Disease Day. The campaign mobilised the rare disorder community to reach out to their local communities, raise awareness about living with a rare disorder, and establish new connections and local support through the initiative 'Glow Up and Show Up for Rare.'

Rare Disorders NZ wanted the campaign to empower the rare disorder community to stand tall and call for equitable access to health and social care. Rachael was one of many in the rare disorder community who jumped at the opportunity.

Rachael is a Pilates instructor based in Blenheim during the southern hemisphere summer. Due to a rare condition causing life-threatening intolerance to cold temperatures, she is based in Malta during the northern hemisphere summer. Rachel rallied her local community to get behind the cause and was blown away by the local support.

The Embody Pilates Studio offered their space to use for a day of awareness and fundraising for rare disorders. Joss Cornelius from Rad Little Room gave a guided hand reflexology lesson, Agostina Calvo ran a meditation session, Vikram Yadav offered a breathing techniques lesson and Rachael ran a Pilates session. There were brownies, smoothies, teas and coffees for a fundraising morning tea organised by Sharon and Jake Yadav. Honest conversations were shared about rare disorders and even mental health, as both share the challenge of invisibility. 

“The connections made were strong and it was magical to see how free everyone felt to talk so openly and honestly. I am still overwhelmed by the support for the day.”

With events from Invercargill to Warkworth, and broad media coverage, the campaign reached hundreds of thousands of New Zealanders. For Rare Disorders NZ, the campaign confirmed how important it is for people to feel the support of their local communities. These experiences help combat the debilitating feelings of isolation and invisibility that make living with a rare disorder that much harder, and offer instead a sense of hope.

“When you feel your body failing you, on the days when you feel so unwell that you can't move, when you feel misunderstood because there is no awareness of your illness and you're seen to live a ‘normal’ life and ‘look well’, it is a huge relief to have an organisation out there advocating for you. An organisation that knows what you are going through, and the difficulties you face on a daily basis. This support is vital to be able to keep fighting an enduring battle,” says Rachael.  

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Words and images supplied by Rare Disorders NZ