Why #GlowUpShowUp for rare

People living with a rare disorder often have complex needs and face unique challenges.

New Zealand needs inclusive policies which aim to improve healthcare and wellbeing for people living with a rare disorder by removing barriers to access diagnosis, medicines and services.

We need to ensure all people living with a rare disorder have equitable access to health and social care.

Why a health strategy is needed

Systemic barriers and discrimination affect all individuals with rare conditions, and without a box to tick, many fall between the gaps, unable to access services and support. Why should a person have a more difficult pathway to support just because of the complexity or rarity of their disorder type?

To improve health outcomes and remove systemic barriers for people living with a rare disorder in New Zealand, a rare disorder strategy is needed, to ensure no-one is left behind.

Why equity matters

People living with a rare disorder face unique barriers of access to care, treatment, education and employment, largely due to limited awareness, information and expert knowledge on rare disorders, leading to inequitable access to health and social care.

Why early diagnosis matters

Early and accurate diagnosis of a rare disorder is important to accessing a range of treatments and healthcare services, yet for many people living with a rare disorder their journey to diagnosis is often long and distressing, and can be costly – not only to the health system, but to their own health.

Why rare disorder data is needed

"You can't improve what you don't measure."

People living with a rare disorder are getting lost in our health system, because their conditions and their needs are not being captured. New Zealand has no official process for collecting data on rare disorders -  no disorder specific 'tick boxes' for health professionals to select following diagnosis to register the prevalence and severity of the impact of these conditions. This means this sizeable population group and their needs are invisible and missing out on Government funding and resource allocation as a result.

Stakeholder Roundtable

In late 2022, with pro-bono support from medical communications specialists Costello Medical, Rare Disorders NZ hosted a multidisciplinary virtual roundtable event involving key stakeholders from both New Zealand and overseas, including rare disorder advocates, patients/families, clinicians and researchers, to discuss the unmet needs of the rare disorder community in New Zealand and to identify specific challenges and potential solutions.

A summary on key findings and recommendations are outlined in the inforgraphic below: