Rare Disorders NZ: October update
Rare is everywhere: meet Allyson
"I want things to be so much better than they were when I was diagnosed."
Fair for Rare NZ: Chief Executive's update
Now the 2020 election is over and New Zealand has a new government, with a promise to be a party that governs for every New Zealander, there is hope for acknowledgement of the common challenges, the opportunities for equity and inclusion of people with rare conditions.
Congratulations to the Prime Minister Jacinda Ardern and Labour, and thank you to the MPs who met with people living with a rare disorder before the election to hear about their experiences. We so appreciate and offer heartfelt thanks to all the people who took the time to share their personal journeys. RDNZ will continue to work alongside people with rare disorders to clarify their needs and the importance of caring for rare.
COVID-19 highlights the vulnerability of people with rare disorders and, along with the whole world, New Zealand has been focused on managing the crisis while balancing health needs with economic impact. Our vision for a ‘RESET’ economy includes an intention to have specific policies developed for people with rare conditions and with robust evidence highlighting disparities compared with common chronic health conditions we hope to be heard by the new Minister of Health.
With this in mind, our team is busy preparing a comprehensive briefing for the incoming Minister of Health to ensure the specific issues and systemic barriers that impact the rare disorder community are recognised. Our collective is also continuing our Fair for Rare NZ campaign, calling for a National Rare Disorder Framework and Action Plan for comprehensive patient-centred care across sectors with a focus on seven priority areas.
Alone we are rare; together we are strong!
Nga mihi,
Lisa Foster
Fair for Rare NZ campaign
CAMPAIGN ENDORSEMENT
RDNZ has created a one-page document for endorsement by our collective groups and partner organisations. We will use this document to inform the incoming government and new Minister of Health about our Fair for Rare NZ campaign and reiterate the collective nature of our call for a National Rare Disorder Framework. Please email Kim to endorse the campaign on behalf of your organisation.
PARLIAMENTARY PETITION
Our collective petition has more than 4,100 signatures. Please continue to sign and share and show our new government that the rare disorder community deserves a fair health system.
NEXT PHASE OF CAMPAIGN
RDNZ is preparing our Briefing to the Incoming Minister of Health (BIM) and planning a Rare Disease Day awareness campaign. More details in the next newsletter.
Rare disorder webinars
RDNZ is offering three free webinars aimed at the rare disorder community. They cover a range of subjects:
- Pain management for rare disorders
(recording of the webinar from 15 October) - Rare disorder support group advocacy training
10 November, 12-1pm - Finding the needle in the haystack: a genetic diagnosis for a one-in-a-million condition
23 November, 12-12.30pm
All welcome.
Rare Disorders NZ supports Human Rights Commission case against PHARMAC
RDNZ supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug.
“Our organisation wholeheartedly supports Fiona’s case for effective treatment,” says RDNZ Chief Executive Lisa Foster. “It’s shameful that families are forced to move to Australia to access this life-changing medicine, despite continued patient submissions and clinical evidence to show its worth.”
Read the media release on our website
Rare Disease Day 2021
Rare disease day is a great opportunity for our collective to raise awareness about the 300,000 New Zealanders living with a rare disorder. RDNZ will deliver a national awareness and fundraising campaign, and we’re encouraging support groups to organise an event during or around the month of February to raise awareness of rare conditions in your community.
Check out the Rare Disease Day website for more information and event ideas.