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.

2015 Events

LAM Trust Movie Event

Location: Bridgeway Theatre, North Shore

Date: 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

Location: Bayfield Early Education Centre

Date: 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

Location: Bayfield School

Date: 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 http://www.rarediseaseday.org.nz

Acromegaly-Activithon

Location: Anywhere in NZ

Date: 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: https://www.facebook.com/events/433860303431800/

Online donation page: https://givealittle.co.nz/org/acromegaly

NZORD Movie Evening

Location: Auckland

Date: 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.

Facebook page: www.facebook.com/events/670753743047743/

NZORD movie night

Location: Lighthouse Cuba Street, Wellington

Date: 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: RDD@nzord.org.nz.

Facebook page: www.facebook.com/events/319453748264772/

Events from 2014

‘Sparkle and Shine’ at Lyall Bay School

People with rare diseases in New Zealand are few and far between, like “Rare Gems”. Lyall Bay School is getting involved in Rare Disease Day as we have people with rare diseases in our school community. Children researched rare gems and dressed in matching colours. Other children came along with sparkling and shining accessories including wigs and face paint. The staff also got involved and a lot of tinsel was seen waving in the Wellington wind. We raised over $420 for NZORD by making it a gold coin donation and also raised awareness at the same time.

Yellow Balloons for Liver Disease

KIDS Foundation families, medical staff and supporters met in Auckland Domain on Friday 28th February to mark Rare Disease Day. A talented St Johns yellow eyed penguin called Primo - helped us release yellow balloons to raise awareness of the early warning signs of paediatric liver disease.

A fun way of communicating a very important message - painting the sky yellow to mark the day !

The balloons were symbolic of our brave liver children - their courage and tenacity.

As we watched the balloons - we remembered fondly, our precious children sadly lost to liver disease, gave thanks for those that have overcome the disease, and gratefully acknowledged the precious gift of life offered by liver donors.

Thanks to all who participated!

Highlights were captured by TVNZ.

It is wonderful to see this message being broadcast Nationally with KIDS Foundation families sharing their experiences:

Yellow Balloons for Liver Disease

Public Lectures in Christchurch and Dunedin

Public lectures were held in Christchurch and Dunedin featuring researchers from the University of Otago and Genetics Otago.

The Dunedin lecture was held at Toitu Museum and featured talks by

  • Professor Stephen Robinson
  • Dr Stephanie Hughes
  • Dr Julia Horsfield

The Christchurch lecture was held at University of Otago Christchurch and featured talks by

  •  Professor Martin Kennedy
  • John Forman
  • Caroline Wagteveld McKenzie

‘Glitter for the Gems’ mufti day at Mairehau Primary School

Mairehau Primary School held a ‘Glitter for the Gems’ mufti day on Rare Disease Day.

Some kids wore glittery/sparkly clothes & hair. It was a gold coin donation and $358 was raised for rare disease research.

Mairehau Primary School
NZORD logo. The New Zealand Organisation for Rare Disorders (NZORD) is the proud host of New Zealand Rare Disease Day
Registered Charity CC22512