The latest updates from RDNZ and the rare disorder community. 

Nov 29, 2022, 2:32 PM
New Zealanders affected by rare disorders share their struggles with education system at international UN-agency meeting

Two representatives from the rare disorder community in New Zealand are today participating in a UNESCO-led international meeting to discuss better inclusion in the education system for children living with a rare disorder.

Nov 9, 2022, 11:17 PM
Reducing access to cancer medicine for children to improve equity unacceptable, says Rare Disorders NZ

Rare Disorders NZ is deeply concerned that Pharmac’s announced review of rule 8.1b of the Pharmaceutical Schedule may lead to reduced access to medicines for children with cancer.

Oct 26, 2022, 10:28 AM
Experts convene to discuss NZ’s poor track record on rare disorders

Rare disorder experts from around the world, including New Zealand, are convening for a virtual roundtable today to discuss the dire situation for people living with a rare disorder in New Zealand.

Oct 17, 2022, 12:25 AM
RDNZ makes submission on the Accessibility for New Zealanders Bill

Rare Disorders NZ made a submission on the Accessibility for New Zealanders Bill expressing concern that the current bill will not remove barriers or deliver real progress for disabled people.

Oct 3, 2022, 8:46 PM
Reformed health system must deliver for neurological conditions

The Neurological Alliance, with Rare Disorders NZ's support, sent two letters on Monday 3 October on the Alliance's position in relation to the Health Reforms, the new health system and engagement.

Sep 28, 2022, 1:43 PM
Pharmac’s Spinraza announcement welcome but long overdue

While Rare Disorders NZ will be celebrating this news with the SMA community, frustration remains that it has taken so long to approve this life-changing medicine, having long called for a separate assessment pathway for medicines for rare disorders. 

Aug 16, 2022, 12:46 PM
Pharmac supports Trikafta being funded for eligible patients 6 years and older

Rare Disorders NZ is pleased to learn that Pharmac’s Pharmacology and Therapeutics Advisory Committee (PTAC) has recommended the life-saving drug Trikafta be funded for eligible people for the age groups 6 years and older and 12 years and older.

Jul 16, 2022, 4:27 PM
RDNZ new partner charity of One Percent Collective

Rare Disorders NZ is delighted to be one of the newest partner charities of One Percent Collective.

Jun 2, 2022, 9:14 AM
After years of tireless advocacy, Rare Disorders NZ overjoyed Minister instructs development of Rare Disorder Strategy

Rare Disorders NZ applauds the Government for accepting the Pharmac Review Panel’s recommendation to ‘develop a strategy that will lead to better, more timely services and more equitable support and outcomes for people and whānau with rare disorders’.

May 29, 2022, 10:29 AM
Pharmac funding allocation falls far short of what is needed for rare disorders

Rare Disorders NZ is incredibly disappointed about the inadequate funding allocated to Pharmac in this year’s Budget announcement, as it means life-saving medicines that many in the rare disorder community are desperately awaiting access to will not be funded for another year, and lives will be lost as a result.