Another glowing Rare Disorders Month

It is wonderful to see how each year Rare Disorders Month delivers new highlights, achieves new heights and reaches new audiences, and this year was no different.

We saw51 landmarks light up for rare on Rare Disease Day across the country in recognition of the 300,000 New Zealanders living with a rare disorder.

Businesses, schools and kindergartens once again took initiatives to raise awareness and funds for rare disorders, like Necks best thing who raised an amazing $1,330 for Rare Disorders NZ from a week-long fundraising campaign.

The Rare Beer Challenge was a resounding success in its new home of Auckland under the auspices of 16 Tun. Over $8,600 was raised from the event, including the satellite event at The Malthouse in Wellington, and an additional $800 was raised by the challenge champion Shining Peak from auctioning their winning brew.

Over the course of the month, over $18,000 was raised for Rare Disorders NZ. We are so grateful for everyone who fundraised and donated. These funds will go a long way to supporting the important work we do.

We were also incredibly grateful to the many New Zealanders living with rare disorders who put themselves forward for media stories to help highlight the challenges and needs of the rare disorders community. We had over 20 stories in the media, covering topics from genomics to health insurance to caring for someone with a rare disorder.

But there were two significant highlights from the month that stood out to the Rare Disorders NZ team.

One was the launch of the latest white paper on the impact of living with a rare disorder in New Zealand. It stood out because it offered a moment of reflection on how we are now routinely seeing top health officials and Ministers at our events. It means that the rare disorder community is being recognised and heard and that our cause is valued. The Minister of Health spoke at the launch, acknowledging the challenges people living with rare disorders face, about how the Government needs to do more and spoke of their intent to do so. He was speaking to a room of over 100 attendees, including support group leads from around the country, MPs, health officials, researchers, clinicians, industry representatives and partner organisations, and it felt like there was a shared vision of the pathway forward. It was uplifting to sense the energy and momentum, and it was commented on by many.

The other event that stood out was the morning tea for support group leads following the white paper launch. Many of the support group leads have been leading their groups for a number of years. They are seasoned advocates, incredibly knowledgeable about their respective disorders and extraordinarily compassionate. They know each other well after years in the rare disorders advocacy space, and the sense of camaraderie in the room and joy of reconnecting had the room glowing.

Rare Disorders Month is a special time of year where rare disorders get to enjoy the spotlight and where we get to see how much support and compassion there is for this community. The Rare Disorders NZ team are still glowing from the month and determined to not let the momentum for meaningful change wane.