The latest updates from RDNZ and the rare disorder community.
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.
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.
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.
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.
Our Chief Executive, Lisa Foster, has reported on the annual GP CME in Rotorua she attended last week to represent the rare disorder community.
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.
Rare Disorders NZ and our rare disorder collective attended the Lie Down for Life at Parliament yesterday.
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.
RDNZ’s Chief Executive Lisa Foster attended the launch of the Mental Health and Wellbeing Commission in Wellington yesterday.
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.