The latest updates from RDNZ and the rare disorder community.
In this issue. International Children's Day Colouring Competition, Health Select Committee Hearing, Wellington Rare Disorder Catchup, The Medicine Gap, COVID Vaccine Update
Rare Disorders NZ has made a submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey” on behalf of the rare disorder community as we do not feel those with a rare disorder have been included in the survey questions
The Ministry of Health does not recommend the development of a national framework for rare disorders at this stage.
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
The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 22 September from 10-10.30am at our offices in Newtown.
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.