Rare Disorders NZ: August update

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I would like to start by offering heartfelt appreciation for five years of patronage and support to the rare disorder community and the peak body that represents them, offered by Dame Patsy and wish her all the best for next steps in her journey. We are excited to connect with Dame Cindy Kiro who has an accomplished background in health, wellbeing of children and in science as CE of Te Apārangi – Royal Society of NZ.

The value of having such distinguished dignitaries value and support our community goes beyond words as one of the main things that people with rare disorders express is that they feel abandoned - so this recognition and understanding is invaluable. Our vision is for this recognition to become a reality across our new health and wellbeing sector with improved awareness, education, and most importantly, appreciation of the difficulties involved in living with rare illnesses.

One barrier which is centre stage in the media currently is equitable access to rare disorder medicines, and it was fantastic to have the opportunity to present to the PHARMAC Review Panel and feel our community’s voice was listened to and acknowledged. We eagerly await the outcomes from this review and remain encouraged that the same messages were presented by varied NGOs and organisations.

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All these are steps in the right direction and although it takes patience and tenacity to continue the push for equity, it can lead us to a future New Zealand we will all be proud of.

Nga mihi,

Lisa Foster

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RDNZ presented a collective response on behalf of all those with medicines access issues who live with a rare disorder to the PHARMAC Review Panel in June.

"We consulted with our collective of rare disorder support groups to ensure we focused on the key issues, plus created a template with messages to make it easy for groups to respond themselves," says CE Lisa Foster. "In total, the panel received 14 submissions from rare disorder groups within our collective."

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Our CE Lisa Foster recently met with Paula Tesoriero, the Disability Rights Commissioner, alongside support group leaders to represent the needs of the rare disorder community. 

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"Rare Disorders NZ supported the Ministry for Primary Industries proposal in 2019 and is pleased to see this recommendation finally being followed to protect babies," says RDNZ CE Lisa Foster. 

The policy, to be introduced over two years, would ensure all non-organic wheat flour for making bread is fortified in a move the Government says could prevent between 162 and 240 neural tube defects – birth defects of the brain, spine or spinal cord such as spina bifida – over 30 years.

New Zealand’s rate of neural tube defects was high compared to other countries who have a mandatory fortification approach, such as Australia, Canada, and the United States.

“This is about protecting babies. Low folate levels in mothers cause neural tube defects that result in the death of babies, or life-long disability,” Associate Health Minister Dr. Ayesha Verrall said.

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RDNZ recently convened a meeting with Ministry of Health officials to amplify the collective voice of people living with a rare disorder, with a focus on GP awareness and education. 

A number of support group leaders attended this meeting and spoke about their experience of living with a rare disorder in New Zealand. 

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