Feb 22, 2021, 4:04 PM

Rare is everywhere: meet Carsen

"If there had been a framework for his rare condition, the experience would have been very different."

Fair for Rare NZ: Chief Executive update

Our small nation is known for both equity and kindness as its foundation, which are reflected in many of Prime Minister Jacinda Ardern’s policies. Rare Disorders NZ are asking for open and active partnership with establishment of a National Rare Disorder Framework - to ensure we are a part of public health planning and strategy discussions.

With increasing uncertainty due to community cases of COVID-19, there has never been a more important time to gain acknowledgment for people with rare disorders. Fortunately, we have confirmed a meeting with Hon Andrew Little on 1 March where we can provide evidence, offer reasoning, and discuss the ethics and economic benefits of acknowledging and including people with rare disorders within public health planning.
Given most of the developed world already has established frameworks and clear action plans in place to tackle the exceptional barriers facing rare collective communities, we are hopeful for a positive outcome. This is particularly important with the COVID-19 response, vaccine campaign and the Government’s pending decisions on the Health and Disability System Review. It is a time of change with high uncertainty for vulnerable people with rare disorders.
I applaud the recent launch in the UK of a framework which sets out a coherent, national vision on how they will improve the lives of those living with rare diseases. The four priorities of improving diagnosis, awareness, coordinated care and access to treatment gives a blueprint to our Government of the way forward.
Rare Disease Day on 28 February 2021
As part of the global Rare Disease Day 2021 we are very excited to have 11 breweries involved in the inaugural Rare Beer Challenge. This will take place on 26 February at Fortune Favours in Wellington – please join us on the night to raise awareness and funds, more details below.

We offer our wholehearted appreciation to all who graciously offered their time and commitment to tell their stories for Rare Disease Day. This week The Listener magazine published an article featuring a family living with Prader-Willi Syndrome and highlighting the need for a National Rare Disorder Framework. You can read the article on our website.
Petition handover at Parliament
Our updated petition is gathering momentum and we now have more than 5,500 signatures. Please help us to make New Zealand fair for rare by signing and sharing our Petition.

Please join us to present the petition at Parliament to Dr Liz Craig MP, Chairperson of the Health Select Committee, on 24 March (details below) – alone we are rare; together we are strong!

Nga mihi,
Lisa Foster

Rare Disease Day 2021

Media release: Be Rare Aware and support an inclusive health system for all New Zealanders

The New Zealand Government’s support of vulnerable people throughout the COVID-19 pandemic should be applauded - but more should be done to help the 6% of the population living with a rare disorder.

“To better support people with a rare health condition, especially during a pandemic, there needs to be acknowledgment of the specific challenges they face as a collective group and a willingness to act,” says Rare Disorders NZ (RDNZ) Chief Executive Lisa Foster. “With clear recognition as a health priority, practical actions can be implemented for this vulnerable population.”
Read the full media release on our website


Last year we partnered with Fortune Favours brewery to create a Rare Beer to raise awareness and funds for our organisation. This year we’ve expanded the concept to a city-wide Rare Beer Challenge, with 11 Wellington breweries using weird and wonderful ideas, along with rare ingredients and brewing techniques, to produce their version of a rare beer.

These unique brews will be judged by a panel made up of people living with a rare disorder, beer industry experts and celebrity beer fans and one of them will be crowned the inaugural Rare Beer Champion. Please join us from 6pm on Friday 26 February at Fortune Favours brewery.


A number of buildings, including the Michael Fowler Centre in Wellington and the Oamaru Opera House will be will be illuminated to mark Rare Disease Day.

Fair for Rare NZ campaign

Lisa Foster and RDNZ's Chair James McGoram will present the Fair for Rare NZ campaign endorsement document to Minister of Health Andrew Little at our meeting on 1 March 2021. Please consider adding your logo on behalf of your organisation; email Kim to be included. 

We've moved the main petition so that we can reach even more people. Every signature we've received so far counts towards our total - we have over 5,500 signatures but need more. 

Please share the petition with your networks and ask them to sign - together we're creating change.
Reform our healthcare system to include all New Zealanders living with a Rare Disorder

Both petitions will be presented together at Parliament on 24 March 2021. Rare Disease International (RDI) has shared the petition and have also invited Rare Disorders NZ to speak at RDI's Policy Event Calling for a UN Resolution on Rare Diseases.

Petition handover at Parliament

Please join Sue Haldane, Rare Disorders NZ and our collective to present our petition to the Government. Alone we are rare; together we are strong!

Sue and Rare Disorders NZ Chief Executive Lisa Foster will present the petition to Dr Liz Craig MP, Chairperson of the Health Select Committee, on behalf of the 300,000 New Zealanders within the rare disorder community.

DATE: 24 March 2021
TIME: 12.20pm to 2pm
LOCATION: Meet at the Cenotaph, corner of Lambton Quay and Bowen Street, Wellington

Newtown Festival - volunteers needed

We have been offered a free stand at the Newtown Festival on Sunday 7 March. Described as the biggest free music festival and street fair in the country, the one-day event attracts 80,000 people. The purpose of hosting a stand is to get signatures for our collective petition and promote rare disorder awareness.

Can you help to make this a success? Could you or members of your support group spare an hour or two to be on our stand? We need volunteers from 8.30am-6.00pm - please contact Kim if you are able to help.

COVID-19 vaccinations priority list

Rare Disorders NZ has written to the Ministry of Health to ask how the rare disorder community will be included on the COVID 19 vaccination priority list. We will keep you posted on their response and will keep pushing this conversation with the Ministry.
So far disabled people, people with a chronic illness, staff in residential care, and carers of a disabled person whose welfare may be at risk if the carer falls ill are all considered part of the phased vaccine roll-out across New Zealand.  
The Ministry of Health says the vaccinations will begin this weekend, focusing initially on border control workers and those working in managed isolation facilities. Vaccination will not be mandatory in New Zealand. Vaccinations will be free of charge.

For more information about the vaccine see the Ministry of Health Covid-19: Vaccines page

Sick leave bill submissions

Last month RDNZ’s CE Lisa Foster, alongside three support group leads, gave an oral submission to the Education and Workforce Committee on the impact of increasing sick leave for families living with a rare disorder.

RDNZ supported our collective to submit a submission on the Holidays (Increasing Sick Leave) Amendment Bill through the creation of a template and explanation about the process. A total of 12 support groups/individuals made a submission to extend the annual entitlement of sick leave from 5 to 10 days’ paid sick leave, and shared the impact this increase in leave would have on them.

Every submission also highlighted the fact that increasing sick leave entitlements is just one small step that the Government can take to support people living with a rare disorder, but there is so much more to be done to support the 1 in 17 New Zealanders living with a rare disorder and their carers. 
Read more on our website

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