Rare Disorders December 2023 Newsletter
21 Nov 2024
In this issue
- Key achievements in 2023
- Record responses for our Voice of Rare Disorders Survey
- Rare Disorders Strategy update
- Rare Disorders NZ has developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise
- Cross-party parliamentary group on rare and undiagnosed disorders
- Rare Disorders Month 2024
- RDNZ welcomes resignation of Pharmac Chair
- Submission to Pharmac on Proposal to fund supplements for phenylketonuria
- Wellington support group lead catch-up
- Rare Disorders in the Media
Kia ora koutou and greetings,
As 2023 comes to an end I have had the privilege of being RDNZ’s Chief Executive for just over six months. The role has had its fair share of challenges, and I’ve certainly felt extended at times. However, with the support of a great staff team, a great Chair and Board, and the amazing people who live every day with a rare disorder, I can honestly say that I’ve enjoyed (almost) every minute, with the exceptions turning out to be good opportunities for reflection, learning and growth. Thank you all.
I would also like to thank all of those who have provided feedback on Manatū Hauora’s emerging Rare Disorders Strategy. A lot of work has gone into connecting stakeholders, sharing information, writing submissions and commenting on the Strategy. As this piece of work is coming to an end, we are now looking ahead to how the strategy will be implemented to ensure meaningful change, and we will need your ongoing support to make sure this is done in a way that improves the lives of those with a rare disorder in Aotearoa.
The Rare Disorders team and I wish you a Meri Kirihimete and look forward to working with you all in 2024.
Chris
Key achievements in 2023
Record responses for our Voice of Rare Disorders Survey
We were thrilled to have exceeded our target of 1,000 responses for our biennial Voice of Rare Disorders Survey when it closed on 2 December, making it the largest-ever survey of patient-reported outcomes for people with rare disorders in New Zealand. We were also thrilled to have exceeded our target of 100 responses from whānau Māori, enabling us for the first time to report on their particular experiences of living with a rare disorder. Thank you to everyone who completed the survey and helped to share it widely with your networks.
We look forward to sharing the results on 28 February when we launch the white paper at parliament.
Rare Disorders Strategy update
Manatū Hauora’s formal consultation sessions with the rare disorder community - rare support group leads, people living with rare disorders and their carers, whānau Māori affected by rare disorders, the rare disorders clinical/expert community, and RDNZ itself have concluded.
We have provided feedback on the final draft and look forward to receiving the final version of the Strategy shortly after it is submitted to Health Minister Shane Reti in late January for his sign off.
Although there is much in the draft versions we have seen to be positive about, we have re-emphasised to Manatū Hauora that the strategy must include key actionable items, including a rare and undiagnosed disorders centre of expertise; improved rare disorders data collection; internationally equitable access to medicines; and valuing RDNZ’s role in influencing the strategy’s implementation.
These are the things that are not yet well covered that we believe will have big positive impacts on the lives of people and whānau who live with a rare disorder. We will be evaluating the final official version against these criteria to determine the extent to which we’ll be prepared to endorse it.
Cross-party parliamentary group on rare and undiagnosed disorders
Rare Disorders NZ is initiating the establishment of a cross-party parliamentary group on rare and undiagnosed disorders to get parliamentarians advocating for and advancing issues important to people living with a rare disorder in Aotearoa New Zealand. We have sent invitations to all current Members of Parliament, and we encourage our rare disorder community to get in touch with their local MPs over the summer to urge them to join.
We have drafted a template email you can send to your local MP, which you can download here.
Rare Disorders Month 2024
We can't wait to again call on Aotearoa to Glow up and Show up for Rare during the month of March to show support for the 300,000 Kiwis living with a rare disorder.
The campaign will be kicking off on International Rare Disease Day, which next year being a leap year, will be on the very rarest of days - 29 February! A day as unique as this cannot be missed as an opportunity to celebrate uniqueness in our community.
We are planning a number of events during the month including:
- Parliament launch of white paper on our 2023 survey results, 28 February
- Networking event for rare disorders researchers and specialists, 28 February
- Stand at Newtown Festival, Wellington, 3 March
- Rare Beer Challenge, Wellington and Auckland, 8 March
- Medical Student Essay writing competition during March
Help us reach every corner of the motu by getting your workplace and local community to #glowupshowup for rare. We have a number of ideas on our website, and if you have other ideas we’d love to hear them! Contact RDNZadmin@raredisorders.org.nz
RDNZ welcomes resignation of Pharmac Chair
Rare Disorders NZ was pleased to learn that Steve Maharey resigned from his position as Chair of the Board of Pharmac only two days after RDNZ wrote to the new Minister for Pharmac, David Seymour, reiterating our call for the Chair's removal.
Rare Disorders NZ has been calling for his removal from the board after his poor handling of the internal email scandal regarding journalist Rachel Smalley. We have now called on the Minister to appoint a new Chair who will hold the Pharmac executive accountable for a complete culture change which values rather than denigrates the role of patient advocates in making life-saving medicines available to all who need them.
You can read more, including the letter sent to the Minister on our website
Submission to Pharmac on Proposal to fund supplements for phenylketonuria
Rare Disorders NZ made a submission in response to Pharmac's proposal to fund supplements for phenylketonuria and other inborn errors of metabolism.
We are pleased to see that people with phenylketonuria (PKU) are now having their unmet needs recognised, and New Zealand is making steps towards meeting internationally recognised standards of care.
You can read our submission on our website
Wellington support group lead catch-up
We had a lovely pre-Christmas catch-up in our new Wellington office with some local support group leads, board members and staff.
Thank you to everyone who came along!
Rare Disorders in the Media
Opinion piece in the NZ Herald from our Chair James McGoram.
What next for Pharmac boss after 'sick, sneering' remarks about Rachel Smalley?
Ashburton mum calls for change to ailing health system
Campaign to form NZ strategy on rare disorders
Innovation to identify rare genetic disorders in NZ babies
Ursula Christel on Angelman Syndrome
How you can help us help those with rare disorders across New Zealand
Donate
We’re a small organisation with a big heart. We rely on grants and donations to continue improving information and support for patients, their whānau and professionals, as well as to advocate for systemic changes to benefit the entire rare disorder community.
By donating to RDNZ, you’re helping us to provide connection, guidance, advice and resources to those impacted by a rare disorder and for 150+ support groups, and enabling us to represent the rare community’s voice at the highest levels to improve healthcare and wellbeing for people and their whānau living with a rare disorder.
To make a one-off donation to Rare Disorders NZ visit our Givealittle page.
Become a regular donor to Rare Disorders NZ through One Percent Collective
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Please get in touch if you have any questions relating to any articles in this newsletter or if you have anything you wish to discuss.
Kind regards,
The team at Rare Disorders NZ
