In this issue
• Berl report launch
• Questions in the House
• Rare Disorders NZ at GPCME
• Nurses webinar
• Election 2023
• The Therapeutic Products Bill protest
• Supporting the urgent call for newborn screening of SMA
• Rare Disorders NZ proposal for a definition of a rare disorder
• In the media
• Thank you
• How you can help us help those with rare disorders across New Zealand
Introducing Rare Disorders NZ’s new Chief Executive, Chris Higgins
I’m both delighted and feel privileged to have been appointed as Rare Disorders NZ’s Chief Executive. People who live with rare disorders are often short changed by New Zealand’s health, social support and community systems and I am committed to doing my best to change things so that people with a rare disorder benefit from world class therapies and support, and have the best possible opportunities to live both well and long.
I began my career as a health services researcher and my background since then includes senior management roles with the Northland, Waikato and Lakes health boards, and leadership roles in a variety of community, not for profit and advocacy organisations including Presbyterian Support (Northern), Spectrum Care, Brain Injury Auckland, Muscular Dystrophy NZ and New Zealanders for Health Research. I have also served as a Rare Disorders NZ Board Trustee, and am excited to be returning to the organisation as its Chief Executive. I come into the role with a firm belief that our best successes come from working together and amplifying each others’ voices, and I very much welcome any feedback which both celebrates our successes and identifies where we can do better, so please do not hesitate to reach out if and when you need to.
Ngā mihi nui, Chris
On 10th May, Rare Disorders NZ launched a new report, 'Rare Disorders Insights Report: Pathways towards better health outcomes'. Rare Disorders NZ tasked BERL to
Berl report launch
"Without data we cannot know the size of the problem."
obtain an insight into the likely prevalence of rare disorders in New Zealand, considering both diagnosed and undiagnosed incidences. The report found that it is not possible to accurately estimate the prevalence of rare disorders in the country due to the low quantity of data available. With the attendance of officials from the Ministry of Health, Ministry of Disabled People, Pharmac, and MPs from all major parties, as well as health professionals, pharmaceutical companies, academics, patients and patient advocates, we felt this reflected wide-reaching recognition that rare disorders can no longer be ignored in our health system and action needs to be taken.
Access the report here
Questions in the House
Following the launch of the Berl report, Rare Disorders NZ was able to get independent MP Dr Elizabeth Kerekere to ask Minister of Health Dr Ayesha Verrall a question in the House on what steps are being taken to improve data collection on rare disorders.
You can watch this segment of question time in the video here.
Rare Disorders NZ at GPCME
Rare Disorders NZ was at the General Practice Conference & Medical Exhibition (GPCME) in Rotorua in early June to bring attention to rare disorders and raise our organisation's profile among GPs and registered nurses. We had a stand at the medical exhibition with flyers and brochures from a number of patient groups in our collective and were able to answer lots of questions and provide information about the rare disorder sector. We also included a flyer in each delegate’s conference bag about Rare Disorders NZ.
On 5th May, Rare Disorders NZ hosted a webinar for nurses in New Zealand working in the rare disorder field. The webinar was led by two nurses, Sharron Meadows and Rebecca Nicol, who attended a global conference for nurses to establish a global nursing network in rare and undiagnosed diseases, Connecting Nurses Globally – A Roundtable in Rare and Undiagnosed Diseases, in Singapore. The webinar was an opportunity to share what they had learned and encourage other nurses to join the global network.
Read more about the global nursing network here.
Nurses webinar
Following the webinar, Rare Disorders NZ has established a rare disorders nurse group to help facilitate connections amongst our rare disorder nursing community to support engagement with each other.
If you know a registered nurse or a trainee nurse with an interest in rare disorders, please ask them to get in touch if they would be interested in finding out more about our rare disorder nurse group: Kim.mcguinness@raredisorders.org.nz
Election 2023
Rare Disorders NZ is gearing up for the 2023 election. We have sent out our election manifesto to all the major political parties asking them to respond to us with where they stand with regards to improving the health and wellbeing of those impacted by a rare disorder. We look forward to sharing their responses on our website and through social media.
We have also drafted template letters for people in the rare community to request a meeting with their local MP. This is an opportune year to get MPs backing issues important to the rare disorder community and get some political traction. We have drafted three separate letter templates respectively focusing on the following issues:
• The need for better data collection on rare disorders
• Improved medicine access for rare disorder medicines
• The need for a Rare Disorder Centre of Excellence in New Zealand
Download the letters and supporting documents here.
