Rare Disorders NZ: February Update
9 Mar 2022
During such tumultuous times, the connection of our rare disorder community, with our unified call for a better, more just and inclusive world, is both uplifting and grounding. It is people that matter most at the end of the day, and our health and support systems were originally put in place to meet the needs of our most vulnerable, so must be called to account when there are clear failings.
It is this mission that propels us into 2022, where we have a once-in-a-generation health reform (Pae Ora), that still excludes those with rare disorders as a population despite evidence and repeated requests of the need for inclusion; where we have evidenced data from our largest-ever survey that we will formally release on Rare Disease Day 28th February, and where there are growing international expectations, via a United Nations Resolution, to address the challenges for persons living with rare diseases (PLWRD) and their families.
The Resolution goes beyond health. It affirms that addressing the needs of PLWRD is essential to advancing the 2030 Agenda for Sustainable Development, which includes access to education and decent work, reducing poverty, tackling gender inequality, and supporting the inclusion of Persons Living with a Rare Disorder in society.
With Rare Disease Day focus this year on ‘A GLOBAL PRIORITY FOR EQUITY’ and the launch of our White Paper ‘The Voice of Rare Disorders’, there is continued hope that the New Zealand Government may realise the significance of inclusion for improving health and wellbeing for a significant proportion of society who happen to be living with or impacted by rare conditions.
Ngā mihi,
Lisa Foster
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A number of rare disorder support groups also made excellent oral submissions on behalf of their rare disorder support group and a unified voice was heard. The overall request for recognition as a population with clear evidenced health needs was made.
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We received the final written response from the Health Select Committee to Sue Haldane’s petition calling for a National Rare Disorder Framework, and were extremely disappointed to learn that no steps will be taken to recognise people living with rare disorders as a separate population group, and a National Framework for Rare Disorders will not be pursued, as the Committee feels the health reform will meet the needs of this community. We strongly disagree with this outcome, and a simple point must be that without Government awareness of where the system barriers are for persons with rare conditions, how can we ever hope that they will be rectified? RDNZ will continue to push our Fair for Rare NZ advocacy efforts.
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The team at Rare Disorders NZ
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