News
The latest updates from RDNZ and the rare disorder community.
Please stop calling medicine funding a Trolley Problem: NZ Herald by James McGoram Chair Rare Disorders NZ
Pease stop calling medicine funding a Trolley Problem
Rare Disorders NZ AGM
The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 22 September from 10-10.30am at our offices in Newtown.
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.
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.
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.
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.
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.
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.
PVA protest at Parliament
Rare Disorders NZ and our rare disorder collective attended the Lie Down for Life at Parliament yesterday.
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.