Rare Disorders NZ: February Update
Kia ora koutou, greetings and Happy New Year!
Rare Disease Day on 29th February and our own rare disorders month during March suddenly seem very close! As always this is an important time on RDNZ’s calendar and sets the scene for our impact and effectiveness for the rest of the year. We hope that the publicity that will happen later in February and throughout March will incentivise politicians and government department officials to prioritise the things that are important to people living with rare disorders.
Assisted by Professor Gareth Baynam, Medical Director for the Perth (WA) Rare Care Centre, our events will include the parliamentary launch of our White Paper reports on the Voice of Rare Disorders Survey results (one report on the overall results, and one focused on whānau Māori), a “Connecting the Dots” forum for New Zealand’s rare disorders health research community, a networking event for rare disorders support group leads, and a host of “Glow Ip and Show Up” events throughout the country.
Please get involved as much as you can in as many local events as you can manage – the more involvement, the greater the opportunity for media publicity, and the more our politicians and officials will be conscious of being under the spotlight.
Huge thanks to everybody who’s already been helping us to make 2024’s awareness campaign the great success that I’m sure it will be in what promises to be a watershed time for our community.
Ngā mihi,
Chris Higgins
Chief Executive
Rare Disorders Strategy update
Rare Disorders NZ has since December 2023 been pressing Manatū Hauora/Ministry of Health for information about when the Rare Disorders strategy document will be forwarded to Health Minister Hon. Shane Reti.
We were originally informed it would be handed to the Minister in December. This was then moved to 12th Jan, and again to 26th January. After we asked for a further update, we were advised on 2nd February as follows:
“as you are aware we are working with a new government to understand and start implementing their priorities, and we are working hard to make sure advice provided to the Ministers reflects their goals and aspirations. As you may imagine it is a busy time. This means I am unable to provide you with exact timeframes for the strategy to go to the Minister, but I can confirm we are committed to getting it to him when there is the ability to do so”.
We’ve now written to the Health Minister’s office for more information and await a response.
After the Strategy has been approved by the Minister, and depending on its final content, it will fall variously upon Health New Zealand/Te Whatu Ora, Pharmac, Whaikaha and possibly other government agencies to take responsibility for its implementation. We’ve already had very preliminary discussions with Pharmac and will be meeting with Te Whatu Ora’s implementation team later this month to identify the next steps. We’ve also been talking to Associate Health Minister (Pharmac) David Seymour’s staff about meeting to discuss what the Strategy means for improving access to medicines.
Glow Up and Show Up for Rare this March
The countdown is on! Only two weeks until Rare Disease Day and the beginning of our month-long Glow Up and Show Up for Rare campaign.
Glow Up and Show Up is an advocacy and awareness campaign to put a spotlight on rare disorders and issues important to the rare disorder community. It is also an opportunity for Rare Disorders NZ to raise much-needed funds to be able to continue our work advocating for access to world-class and world-leading health, disability, education and other services for New Zealanders living with a rare disorder.
We have a number of events lined up which you can read more about below, most notably the launch of our white papers based on our 2023 survey results. We’re also thrilled to see people in the rare community getting behind the campaign and organising local events. Please help us get Aotearoa talking about rare disorders, understanding the challenges of living with a rare disorder and getting behind the call for a system that is equipped to meet the needs of those affected.
Through highlighting the issues, raising money and maintaining visibility, together we can bring rare disorders out of the darkness, and into the light.
Get involved and show your support!
We want to see what you are doing to Glow up and Show up - whether it be a photo of you and your whānau or mates sporting our fabulous tattoos, wearing some hi-vis or brightly coloured clothes or accessories to work/school/fun-run, or attending an awareness raising event for rare disorders - we'd love to see your selfie on social media using one of the below hashtags so that we can give you a shout out!
#GlowUpShowUp #DoRightByRare #RareDisordersMonth
We’ve got ideas for captions which you can check out here.
If you would like to organise an event in your community let us know, so we can help spread the word! We have created several campaign assets downloadable from our website to help spread awareness and support for the Glow Up and Show Up for Rare campaign.
Help us to achieve great things for rare
We are a small, high-performing organisation with a big heart, and we rely on grants and donations to continue our work to amplify the collective voice of New Zealanders with rare disorders and to hold the Government to account on issues important to the rare disorder community. Among our current priorities, we are pushing for:
- A Rare Disorders Strategy that is fit for purpose and will lead to meaningful changes that will improve the health and wellbeing for people living with a rare disorder;
- The establishment of a Rare Care Centre Aotearoa to ensure the health system is better equipped to provide planned pathways for clinical care;
- A single barrier-free pathway to rare disorder medicines.
With Rare Disease Day this year being marked on the very rarest of days – 29 February, please support our work and #ShowUp for the rare community by giving $29 through our givealittle page.
Thank you – your support makes a world of difference to what we are able to achieve.
RARE DISORDER MONTH EVENTS
28 February: Connecting the Dots Specialist Event (invite only)
Rare Disorders NZ will be co-hosting a networking event with Victoria University of Wellington for rare disorder researchers and specialists in New Zealand.
Here in New Zealand, there are a number of world-leading rare disorders research initiatives being undertaken, but often in isolation from, and therefore unknown to, one another. This means that opportunities for knowledge and insights to be transferred from one area of research to others, and to clinical practice are potentially being lost.
We hope this event will provide an opportunity for rare disorder experts to talk to and learn from one another – and connect a few dots. This event is invitation-only.
Learn more here.
28 February: White Papers launch
On the 28 February we will be launching the white papers based on our 2023 Voice of Rare Disorders Survey - the largest-ever survey of patient-reported outcomes for people with rare disorders in New Zealand. This event will be taking place at parliament and is invitation-only.
Learn more here.
28 February: An Almighty Yes by Emma Lange
Emma Lange will be featuring in a bittersweet comedy performing as herself as well as a range of outrageous characters as she tells the story of her brain tumour diagnosis. A cloudburst of joy and positivity in the face of serious disease!
This season of "An Almighty Yes" includes a performance on Wednesday 28 February dedicated to raising awareness of Rare Disease Day and Rare Disorders Month. Members of the rare disorder community can use the discount code YES10 at checkout and pay only $10 per ticket for this performance. Meanwhile the full price of general admission that evening will be $27, with $5 per ticket donated to RDNZ. The rest of the run will see tickets priced at the usual $18-$22. Book here
29 February: Rare Disorders Support Group Lead Morning Tea
To mark Rare Disease Day, we will be bringing together support group leads from around the country to celebrate this special day and acknowledge the invaluable work they do to support their respective group members. This event is invitation-only.
29 February: Glowing up for Rare
Eden Park, Christchurch Airport and Wellington’s Michael Fowler Centre are just some of the buildings and monuments around Aotearoa that will be lighting up for rare on Rare Disease Day thanks to the mahi of our amazing volunteer Alanna Peck!
Check out the full list here to find out which buildings in your area will be lighting up for rare on 29th February! If you can, send us a photo of your local buildings lighting up!
March: Rare Disorders NZ Essay Writing competition
Rare Disorders NZ is inviting health professional students to take part in a short essay-writing competition during Rare Disorders Month in March to encourage medical students to engage with and learn about rare disorders. The task will be based around the white paper on RDNZ's Voice of Rare Disorders Survey results from 2023, due for release on 28 February.
There'll be cash prizes for the top three entries, but most importantly we hope the true reward will be discovering the potential of a fulfilling career within the rare disorders space! Find more details here.
3 March: Rare Disorders NZ at the Newtown Festival
We'll be Glowing Up and Showing Up at New Zealand's biggest street party - the Newtown Festival in Wellington! Pop by and get a selfie in our giant frame with our temporary tattoos to show your support for rare! Learn more here.
8 March: Rare Beer Challenge
The Rare Beer Challenge is returning for 2024! On 8 March some of the coolest craft breweries in New Zealand will be showing off their most unique brews in this most epic of fundraisers for Rare Disorders NZ.
Hosted by our wonderful friends at Fortune Favours, this annual competition allows breweries to let their imaginations run wild to brew a beer unlike any other.
If you’re in Wellington on 8 March, come on down to Fortune Favours on Leeds St from 3pm, experience the fun and show your support for rare!
If you're in Auckland, you'll be able to sample some of the entries at 16 Tun, 10/26 Jellicoe Street, Auckland.
Find out more here.
17 March: Timaru rare disorder community get-together
Come meet others in the rare disorder community at this get-together at Cplay (Caroline Bay Playground). There are rooms available also if wet.
Caroline Bay Playground, 1 Virtue Ave, Caroline Bay, Timaru (Off SH 1, Evans St)
30 March: A Rare Kind of Walk Auckland
James McGoram, Rare Disorders NZ's Board Chair, is raising money for Rare Disorders NZ by walking around Maungawhau (Mt Eden) - again, and again, and again!
He will be starting at 1pm and he thinks it will take him around five hours.
Join James - by walking a few loops of the mountain with him on the day, by donating to his Givealittle campaign, or by sharing this page with your friends and loved ones.
Facebook event
Givealittle page
31 March: Rolleston rare disorder community get-together
If you are in the Canterbury region, come meet others in the rare disorder community at this get-together at Rolleston Library (Te Ara Ātea), venue room TBC.
Rolleston Library, 56 Tennyson Street, Rolleston
New RDNZ Contact Details
We have a new phone number and new postal details. Please see below and update your records as necessary:
Freephone: 0800 RARENZ (0800 727-369)
Office: 027-250-0619
PO Box 7081, Newtown, Wellington, 6242, New Zealand
Rare Disorders in the Media
'Positive, energetic' 10-year-old struck down with rare disorder
Thank You
We would like to acknowledge and thank the following sponsors for funding key projects for us over the past two months:
- One Percent Collective
- Alexion Pharmaceuticals
- BioMarin Pharmaceuticals
- Rata Foundation
Thank you also to Kilbirnie Pak’n’Save and Kilbirnie Countdown for donating sausages to a fundraising event for RDNZ at Waitoa Beer, as part of the Rare Beer Challenge.