Mar 9, 2022, 11:29 PM
Logo Rare Disease Day.org
In this issue
  • Rare Disease Day 28 February 2022
  • Pae Pra (Healthy Futures Bill)
  • Rare Disorder videos at GP clinics and medical centres
  • Health Select Committee final response to Sue Haldane's petition
  • Rare Beer Challenge – Postponed
  • Takeda APAC Blood Summit
  • International Rare Disease showcase
  • COVID Vaccine Update

Fair for Rare NZ Chief Executive update

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


Rare Disease Day – 28 February 2022

We are gearing up for International Rare Disease Day on the last day of February - a day to raise awareness of rare diseases globally and to advocate for recognition and improved access to treatment and care for people living with rare diseases and their families. Due to the fact there is limited data being gathered or measured on rare disorders in this country, we are thrilled to launch the results of our Voice of Rare Disorders survey 2021 and White Paper, which provide fresh evidence for why addressing health inequities for the rare disorder community must become a public health priority. Keep an eye on our website and Facebook page on the 28th for all the details.


Pae Ora (Healthy Futures) Bill

Rare Disorders NZ made an oral submission on behalf of all those living with a rare disorder in NZ on the Pae Ora Bill to the Pae Ora Legislation Committee on 1st February. The Pae Ora Bill outlines the core changes within the health reform, including the formal, permanent, establishment of Health New Zealand and the Māori Health Authority. You can view the submission here at 1:11:00

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.

Read our full submission here


New rare disorder video at GP clinics and medical centres

We have produced a short video to help raise awareness of what we do and to encourage more people to get in touch. This video will be played in GP clinics and medical centres nationwide over two weeks on either side of Rare Disease Day. Through this initiative we are hoping more people living with a rare disorder will know that we are here to support them. Check out our video here


Health Select Committee final response to Sue Haldane’s petition

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.


Rare Beer event – postponed

Sadly, but understandably, the Rare Beer Challenge fundraiser for Rare Disorders NZ on 25th February, hosted by our good friends at Fortune Favours, has had to be postponed due to the requirements under the RED setting for hospitality venues, making it too difficult to go ahead. We are hopeful the event will be able to go ahead in May 2022, and we will be sure to keep you posted on our Facebook page as soon we know more.


We need your help
At Rare Disorders NZ we are passionate about raising the collective voice of the rare disorder community and advocating for systemic changes to benefit the entire rare disorder community.
Please consider giving to Rare Disorders NZ this Rare Disease Day – your donation, no matter how small, will make a big impact.❤
Thank you for your support.

Takeda APAC Blood Summit

Our CE Lisa Foster will be presenting in a panel discussion at the Takeda Asia Pacific Blood Summit Conference on 23 February with a focus on Patient Empowerment and the lack of recognition of rare disorders in New Zealand. Anyone interested in viewing this presentation please send us an email


International Rare Disease Showcase

Our CE Lisa Foster was invited to take part in the annual International Rare Disease Showcase, hosted by the UK-based charity Beacon (formerly known as Find-a-cure) from 1.– 3. February. The event highlights the best examples of rare disease progress around the UK and beyond, and Lisa spoke on The Landscape of Rare Disease in New Zealand with a focus on the rare disease situation in New Zealand. Highlighting positive efforts made in addressing healthcare equity for Māori population, Rare Disorders NZ advocacy trying to drive awareness and significant policy change nationally and our hopes for the future


COVID Vaccine Update

Please visit our website to find the latest information on the COVID-19 vaccination for the rare disorder’s community. We are keeping this page updated with all the latest information. 

The team at Rare Disorders NZ

Have you liked our Facebook page yet? This is a great way to stay connected with what we’re up to in between newsletters.

Back to Newsletters

Post your comment

Comments

No one has commented on this page yet.

RSS feed for comments on this page | RSS feed for all comments