The latest updates from RDNZ and the rare disorder community. 

Jul 14, 2021, 1:22 PM
PHARMAC Review panel presentation

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 last month.

Jul 8, 2021, 11:51 AM
Government to mandate folic acid in flour to protect babies

RDNZ has campaigned for more than a decade for the addition of folic acid to flour to reduce the number of babies born with neural tube defects.

Jul 2, 2021, 1:10 PM
Ministry of Health meeting: raising awareness of rare disorders

RDNZ recently organised a meeting with Ministry of Health officials to amplify the collective voice of people living with a rare disorder, with a focus on GP awareness and education.

Jul 1, 2021, 12:18 PM
Disability Rights Commissioner meeting

Our CE Lisa Foster recently met with Paula Tesoriero, the Disability Rights Commissioner, alongside support group leaders to represent the needs of the rare disorder community. 

Jun 17, 2021, 9:58 AM
General Practice Conference & Medical Exhibition

Our Chief Executive, Lisa Foster, has reported on the annual GP CME in Rotorua she attended last week to represent the rare disorder community.

Jun 9, 2021, 10:37 AM
Letter to the NZ Ambassador to the UN about rare disease resolution

Our CE, Lisa Foster, has written to the NZ Ambassador to the UN to request NZ adopt the UN resolution on addressing the challenges of people living with a rare disease and their families.

May 17, 2021, 7:13 PM
PVA protest at Parliament

Rare Disorders NZ and our rare disorder collective attended the Lie Down for Life at Parliament yesterday.

May 5, 2021, 6:14 PM
Media release: Health access must be based on need not diagnosis as disease does not discriminate

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.

Apr 14, 2021, 4:01 PM
Mental Health and Wellbeing Commission

RDNZ’s Chief Executive Lisa Foster attended the launch of the Mental Health and Wellbeing Commission in Wellington yesterday.

Mar 29, 2021, 1:00 AM
Fair for Rare NZ campaign milestone

Last Wednesday RDNZ’s collective petition calling for urgent reform of the health system to include all people living with a rare disorder was handed over at Parliament.