BTSNZ supports Rare Disorders
Rare Disorders NZ white paper launch at Parliament 28 February 2024. Photo by HOWIE.
Every leap year on the 29th February, Rare Disease Day is celebrated around the world (on non-leap years it is recognised on the 28th February). This year Brain Tumour Support NZ joined Rare Disorders NZ and representatives from the New Zealand rare disorders community at a number of events to mark Rare Disease Day, and also to commemorate the start of the inaugural Rare Disorders Month (March).
Brain tumours are both a rare disorder and a rare cancer, which is why Brain Tumour Support NZ stands alongside Rare Disorders NZ, the umbrella group for people living with rare disorders, to raise awareness and advocate for the New Zealand rare disorders community. Brain tumour patients face many of the same challenges as people with rare disorders, such as delayed or mis-diagnosis, lack of effective treatments, insufficient support, and poor access to clinical trials, to name a few.
Brain Tumour Support NZ chair, Chris Tse (right), at the Rare Disorders NZ white paper launch. Photo by HOWIE.
On 28th February our chair, Chris Tse, attended the Rare Disorders NZ white paper launch at Parliament. Two white papers were presented to government - one representing the rare disorders community in Aotearoa and the other looking at whānau Māori living with a rare disorder.
Both papers outline the significant challenges faced by people living with rare disorders in New Zealand. These include: the impact of the disease on their health and everyday life; the financial impact; changed employment and work relationships; family and social life; and mental health and wellbeing.
The need for better healthcare services and treatments for people with rare disorders is highlighted. Access to medicines, better care coordination, and better data collection for rare disorders form part of the white paper’s key conclusions. These important topics feature prominently in the New Zealand Rare Disorders Strategy currently being developed by the Ministry of Health. Both white papers can be downloaded from the Rare Disorders NZ website here.
Writer, comedian and brain tumour survivor, Emma Lange. Photo courtesy of Emma Lange.
Also on 28th February, a group from BTSNZ attended a special performance in Wellington of ‘An Almighty Yes’, a solo comedy show by writer, performer and brain tumour survivor, Emma Lange. Emma was diagnosed with a brain tumour in 2016 and following a lengthy period of recovery and reflection, has relaunched her stage career with this beautiful, bittersweet show filled with moments of laughter, joy and optimism. With successful seasons in Auckland and Wellington, and an upcoming season in Dunedin, Emma is determined to both entertain and raise awareness about brain tumours and rare disorders.
Other events we attended were the Rare Disorders NZ morning tea for support group leads, with guest speaker Dr Gareth Baynam, the iconic Newtown Festival in Wellington and the Rare Beers Challenge (Auckland and Wellington).
BTSNZ chair, Chris Tse, attended a morning tea for Rare Disorders NZ support group leads on Rare Disease Day 29th February. Photo courtesy of Rare Disorders NZ.