Amplifying Unheard Voices

Raising a child with a complex medical condition is tough. When that condition is rare, it presents an added layer of challenges because there are so many unknowns. It’s common for families in this situation to feel helpless and isolated.

Sue Haldane’s daughter, Lizzie, suffers from a rare and complex genetic condition called 22q Deletion Syndrome. The demands from the disease are relentless, exhausting and at times, overwhelming. The fact that the New Zealand health system offers no pathways to support those affected by rare disorders makes the situation worse.

There are no set guidelines for health professionals to refer to when a condition is difficult to diagnose. There is no rare disorder data registry to find the number of others affected by a condition. There’s not even an official definition of what is considered rare.

Sue has had to navigate the system without guidance to meet Lizzie’s complex care needs. She spends countless hours researching, finding the right specialists, convincing others of Lizzie’s needs, and repeating her story over and over. Sue faces new hurdles and challenges to overcome as Lizzie grows older. She never gets a break.

Our partner charity, Rare Disorders NZ (RDNZ), is the only national organisation representing all New Zealanders who live with a rare condition. When Sue came into contact with RDNZ, they completely understood her situation – she finally had a voice!

RDNZ represents Sue, Lizzie, and over 300,000 New Zealanders with a rare condition by providing a strong unified voice and advocating for public health policy and a healthcare system that works for those with rare disorders. RDNZ works with the Government, clinicians, researchers, and industry to promote diagnosis, treatment, services and research.

Sue wanted to do something to bring attention to the needs of the rare disorders community. She joined forces with RDNZ to initiate a petition that called for the development of a New Zealand National Rare Disorder Framework. In consultation with its collective, RDNZ developed a blueprint to address the inequitable access to health and social care for those living with a rare disorder.

RDNZ supported, guided, and walked alongside Sue as she reached out to MPs, gathered signatures, and rallied the rare disorders community behind the petition. Sue and RDNZ then presented a petition to the Minister of Health and to the Health Select Committee – a petition of over 8,000 signatures!

This is what RDNZ does. It offers the rare disorders community a place to turn to where they feel understood, supported and visible. It empowers people affected by a rare disorder to make their voice heard. It helps patient groups meet with politicians, make submissions on proposed legislation, and connect with the right people. RDNZ listens when others won’t, and uses the knowledge from those stories to advocate for a better system.

Sue felt a huge sense of relief and vindication when the Minister of Health recently announced that he had instructed his officials to develop a Strategy for Rare Disorders. RDNZ and the entire rare disorders community felt it too! It was an achievement made possible by a lot of hard mahi from a community that has been undervalued and made to feel invisible for too long.

“Rare Disorders NZ has given me and many, many others the sense of having a voice. Thanks to Rare Disorders NZ, more people know about the challenges of our lives – from the Minister of Health to friends and family,” - Sue Haldane.

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Words and images supplied by Rare Disorders NZ