May 25, 2020, 5:30 PM

Now that New Zealand is opening up after the COVID-19 lockdown, we are ready to re-ignite our collective call for fairness for people with rare disorders. Being rare does not mean we should be an afterthought when it comes to health policy and planning, especially now. Together we can offer a collective voice, so we are heard! 

We know it was disappointing for everyone to pause the Fair for Rare NZ campaign after our successful launch at Parliament in February. We are now preparing to restart our campaign to ensure fairness and inclusion of the rare disorder community.

RDNZ needs your help to make some noise around our collective call for a National Rare Disorder Framework leading to the election in September. We want your stories, your voice and your issues to be heard more clearly and more widely.

This Framework with its seven priority areas identified by all our groups can be used as a guide in the development of policy and action planning to ensure we are not left behind. It appears that often it is only the loud who are heard and gain action for improvements in access to health and social care for those with rare disorders. We want to roar so we can be acknowledged by this Government. We deserve to be part of future recovery planning.

RDNZ has been working with an advocacy expert to help us plan towards the election. Our three areas of focus will be an Election Manifesto, MP liaison programme and Parliamentary Petition.

This week RDNZ will write to each political party for their Election Manifesto responses to the range of issues highlighted by the Fair for Rare NZ campaign, and will share their answers when completed.

We are asking everyone in the rare disorder community who is keen to share their story to meet with their local MP over the next few months to highlight the importance of Fair for Rare.  

Sue Haldane, advocate and mother, has registered a Parliamentary Petition on behalf of RDNZ asking the Government to commit to the development of a New Zealand National Rare Disorder Framework.

We want to gain as many signatures as possible to highlight the fact rare is many and we matter!

Our team has created resources such as MP letter templates for support groups to use and will be sending these out over the next few weeks.

Alone we are rare but together we are strong!



Lisa Foster
Chief Executive

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