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

TIMELINE

2021

  • 23 November: Open letter calling on the Government to provide accelerated funding for medicines to keep those with underlying medical conditions and compromised immune systems safe and out of hospital during the anticipation of the COVID-19 Delta variant in our communities.
  • 18 November: Children's day colouring competition entries were handed to Dr. Liz Craig MP to deliver to the Prime Minister with messages of what it is like living with a rare disorder.
  • 3 November:Voice of Rare Disorders survey launched
  • 28 October: CE Lisa Foster was invited by Rt. Hon. Helen Clark to speak at an international virtual event with high level stakeholders in October to bring attention to spinal muscular atrophy (SMA).
  • 29 June: Meeting with the Ministry of Health, alongside some support group leaders, to discuss awareness and education for rare disorders.
  • 28 June: CE Lisa Foster met with Paula Tesoriero, the Disability Rights Commissioner, alongside support group leaders to represent the needs of the rare disorder community. 
  • June: RDNZ presented a collective response on behalf of all those with medicines access issues who live with a rare disorder to the PHARMAC Review Panel. 
  • 9 June: CE Lisa Foster attended the annual GP Conference and Medical Exhibition in Rotorua to represent the rare disorder community. Lisa spoke to a number of key contacts in the health profession about the challenges facing people living with a rare disorder, and the need for better awareness of these challenges. 
  • June: Letter sent to Craig Hawke, NZ Ambassador to the UN, to request New Zealand adopt the UN resolution on addressing the challenges of people living with a rare disease and their families. 
  • 16 May: RDNZ and rare disorder collective attended Lie Down for Life at Parliament, organised by Patient Voice Aotearoa to call for better access to modern medicines for genetic, undiagnosed and rare disorders.
  • 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