Rare Disorders NZ: December update
Rare is everywhere: meet Chris
"I want to raise awareness in New Zealand as not many specialists have even heard of it."
Fair for Rare NZ: Chief Executive's update
What this global pandemic has shown is that “the virus does not discriminate, but its impacts do”
Antonio Guterres, United Nations Secretary General
As we wind down 2020 with its disruptions, challenge and high anxiety for so many, and even more so within our own rare community, you may feel that you can only just flop over that finish line at the end of this eventful year!
The solidarity, connection, and support that all New Zealanders graciously displayed during this crisis has led to our small nation being admired by the rest of the world. Our ‘team of five million’ may have gained insight into how it can feel to face uncertainty, barriers and even fear which many living with rare disorders and their carers already understand too well. Above all, COVID-19 has highlighted the real and urgent need for our Government to take action to ensure all people are included in the rebuild and recovery process. As this quote highlights the most vulnerable people, including those with rare disorders, must be included to prevent them being left behind in the scramble and noise.
I want to express deep appreciation to all our groups and partners who offer so much energy and commitment to our combined quest for equity. Despite the issues, 2020 has led to massive momentum including the ability to connect and gain support with our international and Asia-Pacific rare community, and link up with APEC Rare Disease Action Plan which has added importance since New Zealand is hosting APEC in 2021.
Our push to be recognised and included has never been so important; our collective Petition for a National Rare Disorders Framework is paramount to this success as it is only with public awareness and understanding that we can gain change. Sadly, that is no easy task so please help make rare conditions more visible by signing and sharing our Petition.
Lastly, I want to acknowledge our wonderful small and dedicated team at RDNZ, including our Board members, who work tirelessly in difficult circumstances to deliver exceptional support and drive an effective campaign for fairness, inclusion and improved possibilities for all people within the rare community.
Our office will be closed from 23 December to 11 January, we look forward to working with you all in 2021 to help make New Zealand Fair for Rare. Meri Kirihimete!
Fair for Rare NZ campaign: Petition handover
""I try to imagine if, when Lizzie was diagnosed with a lifelong condition, there was a blueprint for coordinated family care. Of course, the person diagnosed should receive laser-like focus, but primary caregivers also need a strategic support plan and formalised care."
Sue Haldane, Mum of Lizzie
Rare Disorders NZ, alongside Sue Haldane, launched a Parliamentary Petition calling for a National Rare Disorder Framework in May this year.
SAVE THE DATE: The Petition closes on 17 March; please join us to hand it to the Health Select Committee on Wednesday 24 March 2021.
Read Sue's story and sign our Petition
Briefing to Minister of Health
Rare Disorders NZ has sent a Briefing to new Minister of Health Andrew Little on behalf of the rare disorder community.
The Briefing details the issues and opportunities to improve healthcare and wellbeing for the 300,000 New Zealanders living with a rare disorder and their whanau. It outlines the need, supported by our collective, for a National Rare Disorder Framework, in line with other OECD countries such as the UK, Australia and the US.
Rare Disorders NZ BIM 2020
Sick Leave Amendment Bill - make a submission
There is an opportunity to make submissions on the extension of the sick leave bill, a positive initiative for people living with a rare disorder and their carers. This will also be a chance to promote the need for a National Rare Disorder Framework. RDNZ will make a submission and we would like to encourage you and your support group to write your own.
RDNZ has created a submission template to make this process easy. The submission deadline is 28 January 2021. If you have any questions, please email Kim.
Submission Template and Guidance Holidays (Increasing Sick Leave) Amendment Bill
Webinars for the rare disorder community
Here are some resources created for people living with a rare disorder and their family by Rare Disorders NZ and our expert advisers.
- Pain management webinar - Dr Buzz Burrell
- Finding a needle in the haystack: a genetic diagnosis for a one-in-a-million condition webinar - Dr Louise Bicknell
- Rare disorder support group advocacy webinar: email Kim for the recording link
Promoting awareness of rare disorders
GP PULSE ARTICLE
An article entitled ‘Individually rare, collectively common’ was published on the Royal NZ College of GPs website and sent to their network of 5,500 GPs.
NZ RESPIRATORY CONFERENCE
Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last month.
Our Chief Executive Lisa Foster and Relationship Manager Kim MCGuinness attended the conference on behalf of the 34 rare conditions in our collective with respiratory issues, as well as promoting our Parliamentary Petition for a National Rare Disorder Framework. Examples of rare disorders that have respiratory issues include Ehlers-Danlos Syndromes, Cystic Fibrosis and some chromosome disorders.
Lisa and Kim spoke to a wide range of healthcare professionals, including specialists, nurses and physiotherapists who were keen to learn more about rare health conditions and the resources available to help their patients.
Read more on our website
Share your story for Rare Disease Day
Rare Disease Day takes place on the last day of February every year and is an opportunity to raise awareness of the 300 million people living with a rare health condition worldwide.
Rare Disorders NZ will be sharing stories of the many New Zealanders living with a rare disorder and we'd love to include your story too. If you're interested in sharing your experiences, please email Amy.