Mar 2, 2020, 2:03 PM
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Last Friday Rare Disorders NZ launched a campaign calling for the development of a National Rare Disorder Framework.

The launch took place at Parliament and was hosted by Dr Liz Craig MP. Rare Disorders NZ and its 140 support groups are calling on New Zealanders to acknowledge the common challenges faced by people living with a rare disease.

More than 100 attendees attended the launch which was also an opportunity to celebrate Rare Disorders NZ’s 20th birthday.

“A National Rare Disorder Framework would identify positive solutions to reduce the costs of chronic health conditions by addressing need earlier, enabling more people to participate in work and the community,” says Rare Disorders NZ chief executive Lisa Foster.

“Such measures would also lessen both the time required away from work and the mental stress for patient carers. All of which would directly benefit the New Zealand economy.”

People living with a rare disease in New Zealand face inequitable access to diagnosis, treatment and care – particularly when compared to countries such as Australia.

As well as Dr Craig, the launch was attended by National Party Health Spokesperson Hon Michael Woodhouse and MP Greg O’Connor, along with health professionals and researchers. Rare disorder support groups were well represented with people from a range of different conditions attending the launch.

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