Rare Disorders NZ - Latest News [Page 1]

Children With Rare Disorders Share Messages With The Prime Minister

Friday, 19 November 2021, 2:10 pm | Rare Disorders NZ

To mark International Children’s Day, messages from children from the rare disorder community throughout New Zealand will be handed to the Prime Minister to tell her what it means to live with a rare disorder. Through a colouring competition organised ... More >>

UN Event For Rare Disorder SMA: Leading Advocates Urge Government To Act For Those Living With The Condition In NZ

Monday, 1 November 2021, 6:42 am | Rare Disorders NZ

October 29, 2021 All change starts with awareness and today we had the privilege to be part of a powerful United Nations event to raise awareness of a rare disorder called Spinal Muscular Atrophy (SMA). The opening address was provided by H.E. Mr. ... More >>

Rare Disorders NZ Invited To Present At An International United Nations Event

Thursday, 28 October 2021, 1:04 pm | Rare Disorders NZ

Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease. The event has been initiated ... More >>

Rare Disorders NZ Invited To Present At An International United Nations Event

Thursday, 28 October 2021, 9:01 am | Rare Disorders NZ

Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease. The event has been initiated ... More >>

Health Access Must Be Based On Need Not Diagnosis As Disease Does Not Discriminate

Thursday, 6 May 2021, 1:25 pm | Rare Disorders NZ

Rare Disorders NZ (RDNZ) supports Patient Voice Aotearoa’s nationwide ‘Lie Down for Life’ to call for better access to modern medicines for genetic, undiagnosed and rare disorders. “Anyone, anytime, could find themselves or a loved one having ... More >>

Are The Odds Fair On Rare Roulette?

Thursday, 18 March 2021, 1:26 pm | Rare Disorders NZ

Living with a rare health condition can be a genetic lottery as well as a complete game of chance in terms of the support and healthcare available in New Zealand. “Anyone, anytime, could find themselves or a loved one having to cope with the symptoms of ... More >>

Be Rare Aware And Support An Inclusive Health System For All New Zealanders

Thursday, 18 February 2021, 11:23 am | Rare Disorders NZ

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, ... More >>

Who Will Win The Coveted Rare Beer Crown?

Wednesday, 17 February 2021, 11:15 am | Rare Disorders NZ

Unusual brews made with seafood, foraged botanicals and barrel-aged ales are just some of the entries vying to win a new city-wide beer competition. Eleven Wellington-based brewers will take part in the inaugural Rare Beer Challenge next month to raise awareness ... More >>

Rare Disorders NZ Supports Human Rights Commission Case Against PHARMAC

Thursday, 17 September 2020, 2:50 pm | Rare Disorders NZ

Rare Disorders NZ (RDNZ) supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug. “Our organisation whole-heartedly supports Fiona’s case for effective treatment,” ... More >>

Parliamentary Petition: Time To Make The 300K Families Affected By Rare Disorders A Health Priority

Monday, 29 June 2020, 4:00 pm | Rare Disorders NZ

Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations ... More >>

PHARMAC Funding Increase "Extremely Disappointing"

Monday, 11 May 2020, 6:15 pm | Rare Disorders NZ

Rare Disorders NZ is extremely disappointed with the announcement yesterday of a pre-budget boost to PHARMAC’s funding by $160 million over four years. In real terms this amount is a drop in the ocean of unmet need for adequate medicine funding ... More >>

Recent PHARMAC Funding Decisions

Thursday, 23 April 2020, 4:08 pm | Rare Disorders NZ

You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan . Rare disorders are often more complex and less understood than common conditions, which leads to marginalisation and even dismissal. This is evident in ... More >>

Rare Disorders NZ Provides Vital Voice For Vulnerable Group

Thursday, 16 April 2020, 3:46 pm | Rare Disorders NZ

People living with rare disorders are vulnerable in the current pandemic and need extra support to ensure their voices are heard. Rare Disorders NZ (RDNZ) commends the Government for ensuring there is a way for this group’s concerns to be heard ... More >>

Call For Immediate Government Action To Remedy “Unfair Barriers” For 6% Of New Zealanders

Friday, 28 February 2020, 11:46 am | Rare Disorders NZ

A major campaign’s being launched at Parliament this afternoon to call for the rights of 300,000 New Zealanders struggling to navigate daily life with a rare disorder. Front and centre of the Fair for Rare NZ campaign is an immediate call for the government ... More >>

Join Us This Rare Disease Day To Help Those With A Rare Disorder

Thursday, 13 February 2020, 3:19 pm | Rare Disorders NZ

A nationwide campaign to raise awareness and money for the 300,000 New Zealanders living with a rare disorder was launched last month by Rare Disorders NZ. Nicola's youngest son James was taken from his family at just five years old by a condition ... More >>

A Unique Beer For A Sobering Problem

Thursday, 13 February 2020, 6:51 am | Rare Disorders NZ

Craft beer fans in Wellington and Auckland will have the chance to experience a very special brew for Rare Disease Day at the end of the month. Rare Disorders NZ and award-winning brewers Fortune Favours have teamed up to create a unique beer ... More >>

Rare Disorders NZ congratulates Kalydeco campaigners

Monday, 27 January 2020, 3:39 pm | Rare Disorders NZ

Rare Disorders NZ (RDNZ) congratulates campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis in New Zealand. More >>

Let your voice count to make a difference

Monday, 18 November 2019, 2:28 pm | Rare Disorders NZ

Would you like to play a part in highlighting the barriers within the current health system for people living with rare disorders? Complete this survey and share your experiences. More >>

UN recognition for all people living with a rare disease

Tuesday, 24 September 2019, 2:35 pm | Rare Disorders NZ

Rare Disorders NZ (RDNZ) congratulates Rare Diseases International for ensuring that the UN Member States adopted a political declaration on universal health coverage (UHC) that includes mention of rare diseases. More >>

People with rare health conditions need equitable treatment

Monday, 2 September 2019, 2:13 pm | Rare Disorders NZ

Rare Disorders NZ (RDNZ) applauds the Government’s recent announcement on cancer care but is urging more action to support all New Zealanders with chronic health conditions. More >>

 

 
 
 
 
 

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