Major milestone reached for Strategy implementation

Significant progress has been made towards implementation of the Rare Disorders Strategy.

On 11 November, Rare Disorders NZ attended a Roundtable meeting hosted by the Minister of Health to discuss advancing the implementation of the Rare Disorders Strategy (RDS). Also in attendance were the agencies responsible for implementing the RDS: the Ministry of Health, Health New Zealand, Pharmac, and Health Quality & Safety Commission, as well as Health Select Committee Chair Sam Uffindel MP and Act Spokesperson for Health Todd Stephenson MP.

This was the first inter-agency meeting since the Strategy’s launch by the Ministry of Health in July 2024, and came about as a result of Rare Disorders NZ’s persistent call for an implementation action plan.

Prior to the meeting, Rare Disorders NZ made our expectations clear and stipulated four outcomes we wanted to see achieved at the meeting in the below letter.

We were pleased the Minister agreed at the meeting that these expectations were reasonable, and directed the officials present to confirm the following:

1. Leadership and Oversight - Each agency appointed a senior lead to oversee the implementation of the RDS.

2. Implementation Planning - Agencies will develop an implementation plan to support the delivery of the RDS. These plans will outline key actions, timelines, and responsibilities. A draft consolidated implementation plan will be provided to the Minister early 2026.

3. Ongoing Coordination – The senior lead from the Ministry of Health will chair a cross-agency forum to oversee delivery of the RDS. The group will include Rare Disorders NZ, Health New Zealand, Pharmac, and HQSC, and intends to meet every six months.

4. Accountability and Reporting - Health New Zealand, the Ministry of Health, and Pharmac will report on progress through their existing performance and accountability mechanisms.

These outcomes were subsequently confirmed in a letter from the Ministry of Health.

The outcomes from the meeting mark a significant step in progressing the implementation of the RDS and we are grateful to support group leads for their engagement and input to get to this point and to the wider community for their support for our petition. As the goal of the petition has been achieved we will now be closing it.

Strong and persistent advocacy ensured the Rare Disorders Strategy was not left forgotten and that we are now an important step closer to improving the health and wellbeing of people living with rare disorders in Aotearoa New Zealand.