Get involved in Rare Disease Day and help raise awareness and funds for support groups and research throughout the country.

People with rare diseases in New Zealand are few and far between, so we like to think of them as Rare Gems.

By working together, we know we have a greater chance of our Rare Gems being seen and heard.

Upcoming 2016 Events

NZORD Cocktail Evening

The Wellington Club

29 February 2016

NZORD is hosting a cocktail evening on Monday 29th February to celebrate Rare Disease Day, this event will be held in Wellington at the Wellington Club. Pop this date in your diaries, more details to follow soon.

A big thank you to all the supporters of Rare Disease Day events!

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2015 events

LAM Trust Movie Event

Bridgeway Theatre, North Shore

26 February 2015

A movie evening featuring The Second Best Exotic Marigold Hotel. There will be a monster book raffle with books kindly donated by the Women’s Bookshop in Ponsonby. This event is to support the LAM trust and to celebrate Rare Disease Day 2015.

Rare Disease Dress Up Day

Bayfield Early Education Centre

26 February 2015

We have a young girl in preschool who has Batten Disease and we would like to honour her by acknowledging “Rare Disease Day”. This will be a dress up day for the children and a gold coin donation so if you would like to bring your child in a dress up costume on this day and bring a gold coin we will have boxes set up to use on the day. Thank you for your support for this very worthy cause.

Katie has attended Bayfield Early Education Centre for 4 years and the staff and children have become an important part of our journey. They have seen Katie go from a loud, funloving, walking, talking 2 year old to where she is today. The teachers often remind us how she was the happiest, loudest, biggest eater. Although Katie is nearly 7 she still goes to preschool 2 days a week and loves it. For us to have their ongoing support is much appreciated.

Bayfield School Gold Coin Day for International Rare Diseases Day

Bayfield School

27 February 2015

Wear jeans to support those with rare genes in our community

Each year on the last day of February International Rare Disease Day is recognised. The aim is to raise awareness of the isolation and plight faced by families living with a rare disease.

Katie’s brother, Caleb, and sister, Amy, both attend Bayfield School and we are very appreciative of the school supporting International Rare Disease Day again. There is no specific Batten Disease charity in New Zealand however we are supported by Batten Disease Australia and Lysosomal Diseases New Zealand. We appreciate the school supporting either of these charities by holding a gold coin day at school on Friday 27th February.

Alone there are few people with each disease but together, under the Rare Disease banner, we can find a voice and help support families dealing with what are often very difficult circumstances.

If you would like further information you can find it at


Anywhere in NZ

28 February 2015

As discussed at the AGM last year we have put together our first ever charity event, the NZAS - Acromegaly Activithon to raise funds to begin a publicity campaign which is to raise awareness of our rare condition to GPs.

Join the Acromegaly Activithon on Saturday 28th February 2015 - NZ Rare Disease Day.

This is the first fundraising event for the Acromegaly Society, proudly organised by our ex-chair Donna Bosson. All funds raised will go towards our Awareness Project targeting General Practitioners across New Zealand.

All you have to do is set a distance of some chosen exercise you intend to complete, it could be a run/walk/swim/row/jog etc. It has to be something you can complete, feel successful about doing and fits in with what you can achieve with our rare condition. Just get friends, family, colleagues and workmates to sponsor you using the sheet provided.

Once you have completed the Acromegaly Activithon collect in their pledges and deposit into The New Zealand Acromegaly Society Account by:

Internet Banking:

Bank: Westpac Banking Corporation
Account Name: New Zealand Acromegaly Society
Account Number: 03 0252 0840639-00

or by Credit Card via our Give-A-Little page

Facebook page

Online donation page

NZORD Movie Evening


26 February 2015

NZORD are hosting a movie evening in Auckland. A special opening night screening of “The Second Best Exotic Marigold Hotel” is taking place at the Capitol Cinema, 610 Dominion Road, Balmoral at 8.30pm.

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NZORD movie night

Lighthouse Cuba Street, Wellington

26 February 2015

NZORD is holding a movie night on Thursday 26 February to raise awareness for Rare Disease Day. We will be showing the Second Best Marigold Hotel. If anyone would like to get in early and book some tickets please email:

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