Celebrating outstanding achievements on Rare Disease Day

Rare Disorders NZ marked Rare Disease Day and celebrated our 25th anniversary at Government House on 28th February with an awards ceremony to recognise select individuals who have spearheaded significant initiatives for rare disorders.

The awards were presented to the recipients by Rare Disorders NZ’s patron, Her Excellency, The Rt Hon Dame Cindy Kiro, GNZM, QSO, Governor-General of New Zealand.

Lifetime Achievement Award – John Forman

John is the founder of Rare Disorders NZ, formally known as the New Zealand Organisation for Rare Disorders, establishing a central point for thousands of families around New Zealand affected by rare disorders with no where else to turn to for support.

John has been advocating for people living with a rare disorder for 5 decades, and has had an influential role in the set-up of the metabolic service, the expansion of newborn screening, the development of the Carers Strategy and establishing a patient group for medicines, among many other achievements.

Outstanding Advocacy Award – Sue Haldane

Sue is the mother of Lizzie who lives with 22q Deletion Syndrome. She has spent the last two decades fighting barriers within our health and social systems to ensure Lizzie’s needs are met. Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder and has been a tireless advocate for Rare Disorders NZ.

In 2021 Sue took on the responsibility of fronting our petition to Parliament as part of the Fair for Rare Campaign, rallying the community in calling for the establishment of a National Rare Disorder Framework.

This resulted in her meeting with the Minister of Health and presenting to the Health Select Committee. The Government announcement a year later that it would develop NZ’s first Rare Disorder Strategy is a direct result of Sue’s mahi.

The Collaborative Leadership Award - Denise Astill and Jacki Morris from Foetal Anti-Convulsant Syndrome New Zealand

Denise is the Founder and Executive Officer and Trustee and Jacki is the Chairperson of Foetal Anti-Convulsant Syndrome New Zealand.

Their advocacy has resulted in real change nationally and internationally for those with a rare disorder.

Through their tireless mahi educating and raising awareness they have saved the lives and prevented disability in thousands of children by getting warning labels for pregnant women on boxes of anti-seizure medication. Denise and Jacki demonstrate the value of patient support groups and what they are able to achieve with perseverance and determination.

Rare Disorders Research Award - Professor Stephanie Hughes of Otago University

Stephanie has dedicated her career to rare disease research, community outreach and family support. Her research focuses on Batten disease, an ultra-rare childhood neurodegenerative disease. Stephanie’s skills in gene therapy and neuronal models have been highly sought after with collaborations throughout Aotearoa New Zealand and internationally.

Photo caption: Back - left to right: James McGoram (Chair of RDNZ), John Forman,  Judith Forman, Her Excellency, The Rt Hon Dame Cindy Kiro, GNZM, QSO, Governor-General of New Zealand., Chris Higgins (CE of RDNZ) Front: Timothy Forman.