Agenda for July 2026 Rare Disorders Advisory Committee meeting

What we’re doing

Pharmac is sharing what medicine applications will be considered at the Rare Disorders Advisory Committee meeting on Wednesday 29 July 2026.

We understand that people living with rare disorders face many challenges, including access to health care and effective medicines. Sharing the Rare Disorders Advisory Committee meeting agenda offers more transparency to those looking for updates on specific medicines.

The agenda for the meeting includes applications for treatments for X-linked hypophosphataemia, hypoparathyroidism and acromegaly. Pharmac is seeking input from relevant endocrinology experts to inform these discussions. The agenda also includes a review of the medicines already funded in this area.

The records from the Rare Disorders Advisory Committee meeting will be released later in the year. Provisional recommendations will be shared within 30 business days of the meeting.

Funding applications will be reviewed using the Rare Disorders policy principles(external link) and will be assessed in line with Pharmac’s usual processes. 

We are working with the consumer group Rare Disorders New Zealand(external link) to make sure the right voices are heard at this meeting – we thank them for their time and expertise.

Applications

Burosumab (branded as Crysvita) for X linked hypophosphataemia

The Committee will discuss two applications for burosumab for
X linked hypophosphataemia (XLH), one for children and another for adults with this condition. We are considering these separately because the symptoms of the disease are different in children and adults and have different evidence supporting the benefit of burosumab in these groups.

Application for burosumab (for children)(external link)

Application for burosumab (for adults)(external link)

Palopegteriparatide (branded as Yorvipath) for hypoparathyroidism

The Committee will discuss an application for palopegteriparatide for the treatment of hypoparathyroidism without optimal response to conventional therapy. This treatment aims to treat the underlying hormone deficiency, and not just the symptoms of hypoparathyroidism.

Application for palopegteriparatide(external link)

Pegvisomant (branded as Somavert) for acromegaly

The Committee will discuss an application for pegvisomant to treat those living with acromegaly, a condition caused by too much growth hormone, where surgery and other medicines have not worked well enough or are not tolerated.

Application for pegvisomant(external link)

Advisory meeting agenda setting

The scheduling and agenda setting process for advisory meetings considers multiple factors. We aim to balance the relative priorities of clinical advice needed across indications, the factors for consideration for each application (for example unmet health need), the time since applications were received and the internal and advisor resource available to support each meeting.

Applications received through the 2025 Rare Disorders call for applications that are accepted and not included on this agenda will be considered as soon as practicable via the most appropriate Advisory Committee for the application.