We advocate for better healthcare for the 300,000 New Zealanders living with a rare disorder and their families.

TIMELINE

2021

  • 24 March: Petition handover at Parliament to Dr Liz Craig MP, Chair of the Health Select Committee
  • 8 March: PHARMAC formal letter of support for RDNZ received
  • 1 March: Meeting with Minister of Health Andrew Little attended by CE Lisa Foster, Chair James McGoram and mum and advocate Sue Haldane

2020

  • 4 March: Mum and advocate Sue Haldane launches parliamentary petition for National Rare Disorder Framework
  • 28 February: Fair for Rare NZ campaign launch hosted by MP Dr Liz Craig at Parliament
  • 27 January: RDNZ congratulates cystic fibrosis campaigners after PHARMAC announced their decision to fund a medicine for people living with a specific form of cystic fibrosis

2019

  • 10 December: National Party commits to ring-fenced $20 million fund for rare disorder medicines over four years
  • 18 November: RDNZ launches the NZ Voice of Rare Disorders survey
  • 19 October: CE Lisa Foster speaks at the APARDO summit in Taiwan
  • 24 September: Rare Diseases International ensures the UN Member States adopts a political declaration on universal health coverage that includes mention of rare diseases for the first time
  • 23 August: RDNZ supports rare medicine petitions to Parliament
  • 6 August: Meeting with Minister of Health Dr David Clark to discuss issues impacting people with rare disorders
  • 28 February: Rare Disease Day two-page spread in NZ Herald featuring four families with rare diseases

2018

  • 28 November: Australian Government announces support for a National Rare Disease Framework and Action Plan
  • 1 October: PHARMAC receives 13 supplier funding applications for medicines for rare disorders
  • 13 August: RDNZ supports the Ministry of Health's report recommending mandatory fortification of bread with folic acid
  • 5 June: NZORD changes its name to Rare Disorders NZ