Rare Disorders NZ June 2026 update
6 Jul 2026
Pānui June 2026  Message from the Chief Executive Kia ora koutou, For most of the last 20 years Rare Disorders New Zealand (RDNZ) and its support groups have been actively pushing for development and implementation of a New Zealand Rare Disorders Strategy, and it now feels like we’ve turned an important corner. The initial years of long slow burn eventually resulted in the 2022 Pharmac Review report recommending the development of a rare disorders strategy and the Health Minister of the time, Hon. Andrew Little, subsequently announcing his acceptance of that recommendation. In early 2023 the Ministry of Health | Manatū Hauora commenced the process of drafting the strategy in consultation with RDNZ, clinicians and rare disorders support group leads and in July 2024 the Rare Disorders Strategy (RDS) was eventually published. When it became evident that there was no coordinated effort in place to ensure its implementation, Kim McGuinness and I met with the current Minister of Health, Hon Simeon Brown who undertook to call a meeting of the four RDS implementation agencies to require implementation of the RDS under his oversight. This meeting took place in November 2025 and we were pleased to realise all four of the outcomes RDNZ set out to achieve, including a commitment from the four government agencies to develop specific, actionable plans for implementing the RDS, with accountability directly to the Minister. In May of this year the first implementation meeting of the RDS took place, and RDNZ sat down with the agencies to develop a plan for 2026/27 (read more about this meeting below in the newsletter). It was a positive first meeting and we look forward to the next one in 6 months time. During this May meeting implementation agency representatives expressed consciousness of the additional scrutiny from the Cross Party Parliamentary Group on Rare and Undiagnosed Disorders. It’s been a long journey, requiring persistence and contributions from many quarters, but it now seems that we’re finally seeing action which should result in real and meaningful differences. We are pleased that the two biggest political parties have both played important roles in supporting the RDS along the way, and as the election looms we hope no matter which Government comes into power in November that the momentum will not be lost in working to achieve the best possible outcomes from the RDS for people living with rare disorders in Aotearoa New Zealand. Ngā mihi Chris Higgins Chief Executive First implementation meeting of the Rare Disorders Strategy On 6 May 2026, Rare Disorders NZ met with the agencies responsible for implementing the Rare Disorders Strategy; Manatū Hauora - Ministry of Health, Te Whatu Ora; Health NZ, Pharmac, and the Health Quality and Safety Commission for the first meeting of the cross-agency group overseeing delivery of Rare Disorders Strategy. At this inaugural meeting, a draft implementation plan for the Strategy was shared and discussed. The draft implementation plan focuses on actions for Pharmac, the Ministry of Health, and Health NZ for the upcoming 2026/27 financial year to get the implementation off the ground, with the intent for longer term programs of work to be identified and built on as implementation planning progresses. This cross-agency group will continue to meet six monthly to review progress and create future iterations of the implementation plan. Rare Disorders NZ were pleased to see such high engagement from the implementation agencies and a clear commitment to getting started on the implementation of the Rare Disorders Strategy. The next steps are for the implementation plan to be agreed to by the attendees and reviewed by the Minister of Health. Following this process, the 2026/27 implementation plan for the Rare Disorders Strategy will be published. We currently expect this to occur in July 2026.  Paediatric palliative care funding in Budget 2026 Rare Disorders NZ welcomed the Budget 2026 announcement that $15.5 million of new funding over four years would go towards paediatric palliative care, with two dedicated specialist teams to be established in the North and South Islands respectively, as well as a national coordination service and one registrar training position each year. Up until now paediatric palliative care has been severely underfunded under successive governments and Rare Disorders NZ made a submission last year on the Paediatric, Adolescent and Young Adult Model of Care proposed by Health NZ, fully supporting Rei Kōtuku’s submission and their vision for a Paediatric Palliative Care system. While the announcement was not everything we had hoped for, it is a good, and important, first step in the right direction. Read more here. Disability Support Services Bill has disability community concerned On 18 May the Disability Support Services Bill was introduced to parliament and had its first reading in parliament on 21 May. Many in the disability community have been displeased with the Bill in its current state, including Rare Disorders NZ. This is in particular with regards to the level of responsibility placed on families in the first instance to support disabled family members, as well as the lack of consultation with the disabled community during the drafting of this Bill, and the potential for means testing of disability supports to be introduced at a later date. The time frame provided for making submissions to the select committee on this Bill was incredibly short, but Rare Disorders NZ along with many other organisations in the disability community made a submission outlining our concerns in time for the 12 June deadline. Read the submission here.   No One Rides Alone Clive Phillips – a veteran who lives with the condition Multifocal Motor Neuropathy (MMN) wanted to know if someone with MMN could ride the route of the Tour de France, so he set with four fellow veterans to find out in 2025 in the documentary No One Rides Alone. Would they overcome the challenges of the Alps, Mont Ventoux and the Pyrenees? Or would the impacts of this rare disease on Clive’s motor function and strength bring him and the team to a halt? Screenings: 26 June, 6:30pm, Suter Art Gallery, Nelson 30 June, 7:00pm, Christchurch Art Gallery, Christchurch 2 July, 6:30pm, Penthouse Cinema, Wellington 14 July, 6:30pm, Capitol Cinema, Auckland Book your tickets here. featherStrength Kiwi father and filmmaker Jon Earle shares his journey over the last ten years of raising his severely disabled daughter who lives with a rare condition. The film gives an insight into the struggles of coming to terms with a new reality when life suddenly takes an unexpected turn and the effects on family life, identity and relationships. featherStrength is made for anyone who has faced prolonged challenge, and for those who have no bridge out to the world. It asks what remains when certainty disappears, and what it takes to continue. featherStrength has been selected for the DocEdge film festival. Screenings: Sat 4 Jul, 6:00 PM The Capitol Cinema, Auckland (*World Premiere*) Sun 5 Jul, 3:30 PM Takapuna Beachside Cinemas, Auckland Sun 19 Jul, 2:15 PM The Roxy Cinema 2, Wellington Book your tickets here.  Winning essay puts patient experience at the heart of future care During Rare Disorders Month we once again ran an essay writing competition for health professional students to encourage students to think about the unique aspects of providing care for someone living with a rare disorder. Fifth year medical student Yingxin Zhang won for her insightful reflections on the patient experience, and how she weaved in considerations of the patient’s perspective throughout her presentation of the benefits of adopting new technologies. “As healthcare professionals, our role is to steward these advances with care, ensuring genomic innovation is guided not by what technology permits, but by what patients need most.” Thank you to everyone who took part in the competition. You can read the winning entry and the runner up entries on our website here. Review of Pharmac’s Exceptional Circumstances Framework Pharmac's Exceptional Circumstances Framework, which includes NPPA, is currently under review, and Rare Disorders NZ has made a submission. We have raised a number of concerns with the NPPA process over the years, from clinicians, patients and industry alike, about the lack of clarity and consistency in the process. We are pleased to be engaged in this process and hopeful to see improvements from this review. Read our submission here.  Starting a support group and joining our collective There are over 150 rare disorder support groups in our collective. However, there are still many groups not yet part of the collective, and many disorders that do not yet have a support group. Starting a new group If you have been thinking about creating a support group for your rare disorder, take a look at our resource about setting up a support group and contact us at enquiries@raredisorders.org.nz today! We would be happy to give you guidance to get started. Joining the collective with an existing group If you already run a support group and would like to add it to the Rare Disorder Support Group Collective (there are no membership fees), contact Kim at enquiries@raredisorders.org.nz to learn more. Submissions Submission on the the Health and Disability Commissioner Advocacy Guidelines Submission on the Disability Support Services Bill Submission on the review of the Exceptional Circumstances Framework Consultation Thank you We would like to acknowledge and thank the following sponsors for supporting key projects over the past two months: IHC Foundation FH Muter & EM Pherazan Trusts The Lion Foundation Aotearoa Gaming Trust Steadfast Foundation |
