Rare Disorders NZ has made a submission in response to Pharmac’s proposal to fund Emicizumab for severe Haemophillia A.

Rare Disorders NZ supports the proposal to widen access to emicizumab, brand name Hemlibra, for the treatment of severe Haemophilia A without FVIII inhibitors, subject to eligibility criteria.

As stated by the proposal, this would mean that any person with severe Haemophilia A, defined as endogenous factor VIII activity less than or equal to 2%, would have access to funded emicizumab, regardless of FVIII inhibitor titre.

Rare Disorders NZ welcomes this huge step towards meeting internationally recognised standards of care for people with severe Haemophillia A. We request the proposal is approved with no further delay.

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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