Raising the profile of rare disorders
Rare Disorders NZ is calling on communities across Aotearoa to Glow Up and Show Up during March for the rare disorder community to raise awareness and visibility of a population it says has been left in the dark for too long.
Rare Disorders Month is an advocacy and support period for the more than 300,000 New Zealanders who live with one of more than 6000 rare disorders.
During its first few weeks, Rare Disorders Month has seen a rallying of supporters, with community events and fundraisers popping up across the country as support groups, schools, and rare disorder wha¯nau support the rare disorders community.
The month began with the launch of a parent and caregiver guide at Government House, hosted by Dame Cindy Kiro. The new publication guide is intended to help parents and caregivers with children living with a rare disorder.
Rare Disorders NZ chairperson James McGoram spoke at the event and brought to light the importance of the guide as a step towards a commitment from the Government to build a national strategy. ‘‘We have families across the country in desperate need of support among other resources, and this publication for parents and caregivers is one step closer to achieving this.
‘‘However, we still have a way to go to ensure people and families’ voices are heard, acknowledged and their needs are realised through a national strategy.’’
McGoram said the launch of the publication, alongside other events throughout the month, will help raise awareness and highlight the support needed for people living with a rare disorder. He said the challenges people and families are faced with are often overlooked at the decisionmaking process for this population group.
McGoram and his brother Simon both live with a rare genetic disorder called Fabry disease, for which there is no treatment available in Aotearoa. The inherited neurological disorder occurs when an enzyme cannot break down fatty materials to provide energy to the body.
McGoram said the snowball effect from this disorder begins to impact other bodily functions and the issues begin to stack up.
‘‘I found out that my brother and I both share the same genetic rare disorder, and now my two children carry the same genetic disorder passed on through me.
‘‘I’m relieved in some way that at least for my children we are aware of it and can put things in place. However, there are hundreds of thousands of people in New Zealand that are awaiting diagnosis or are without treatment that are in need.’’
Counting patients, wha¯nau and caregivers, as much as 30% of the New Zealand population are directly affected by a rare disorder.
The parent and caregiver guide and information about Rare Disorders Month, is at raredisorders.org.nz. Resources include social media posts, temporary tattoos, and guides on running an event with your community, support group, workplace or school.