Rare Disorders NZ: February Update

In this issue

• Rare Disease Day 28 February and Rare Disorders Month March 2023 
• Tattoos
• Paintvine
• Rare Beer Challenge 2023
• How can you help?
• Parent Guide Launch
• Submission: precision health consultation
• Trikafta Submission for people with cystic fibrosis (CF)
• Pharmac has announced that it is reviewing rule 8.1b of the Pharmaceutical Schedule
• COVID-19 Antivirals
• Patient Voice Aotearoa
• In the media
• How you can help us help those with rare disorders across New Zealand
• Looking Ahead
• Thank you

CE Update

Kia ora koutou

It’s great to be issuing our first newsletter of 2023. This is going to be an exciting year ahead for all of us in the Rare Disorder space. With the International Day for Rare Disease coming up on 28 February, we will be marking this with the launch of our guide for parents and carers with a child newly diagnosed with a rare disorder. We are really pleased to be able to deliver this important resource to support the rare disorder community.

It's fantastic to also be launching the first ever Rare Disorders Month in New Zealand. We are hopeful this will really lift the awareness of rare disorders and the challenges our communities face and of course the solutions that can help improve the situation for the many 300,000 people in New Zealand living with a rare disorder and their families. We can’t do this alone though and we need your help, and there are many ways large or small you can get involved, see the details below. I am very much looking forward to seeing how you get involved.

It is also a busy time meeting with many of the government agencies. This is exciting times ensuring the voice of those living with a rare disorder and their families is heard in the development of the Pae Ora strategies and of course working in collaboration with Manatū Hauora/Ministry of Health on the National Strategy for Rare Disorders.

There are some other exciting projects in the planning stages for 2023, and we look forward to bringing you details of these over the next few months.

We are always keen to hear from you and so if you have any questions or suggestions for us do get in touch.

Michelle and the Team at Rare Disorders NZ

Rare Disease Day 28 February and Rare Disorders Month March 2023

On International Rare Disease Day, we are kicking off the very first Rare Disorders awareness month - calling on Aotearoa to Glow up and Show up for Rare to show support for the 6% of the population living with a rare disorder.

You can help too. It would be great if you could rally your local school, community groups, workplace, as well as family and friends to organise a fundraising event to show their support for rare. Check out our helpful guides on our website for inspiration on ways to #GlowUpShowUp.

Resource packs are now available on our website to help you plan events and find ways to get involved. Go to our website to view and start planning your events, however large or small, and remember to let us know what you’re doing so we can help promote it.

Some events taking place in Rare Disorders Month:

Tattoos

We'd love to see New Zealanders all over Aotearoa show their support for rare by sharing a photo on social media raising their hand with one of our temporary tattoos!

Families, friends, school classes, community groups - get your hands together in a group selfie, or do one yourself and put it on social media - just remember to include the hashtag #GlowUpShowUp. Lets make this go viral!

To order the free temporary tattoos contact Lucy and let her know how many tattoos you would like and your postal address.  

Paintvine

Rare Disorders NZ and Paintvine are joining forces at Harbourside in Wellington on March 2 to make impactful change, one paint stroke at a time. Join us in creating your own bespoke piece of art representing the call for Aotearoa to #GlowUpShowUp this Rare Disorders Month.

Bring your friends, whānau, team, and partner along for a night of collaboration and conversation to raise money and awareness for the rare disorder community. Unleash your inner creative for a fun, social night out - all while making a difference for the 300,000 New Zealanders living with a rare disorder.

Click here to order tickets or find out more 

Rare Beer Challenge 2023

It’s that time of year again! The annual Rare Beer Challenge hosted by our good friends at Fortune Favours is upon us and 21 craft breweries from all over New Zealand have signed up to take on the challenge of creating the most unique beer using rare ingredients and unusual brewing techniques.

Judging takes place on 10^th March and participating breweries and the public are invited to try the beers and see who will be crowned Rare Beer Challenge champion on the night.

Click here to find out more 

How can you help?

Rare Disorders Month is a chance for the 300,000 strong community of rare patients, as well as friends and whānau, to rally together and call for urgency in the health reform that has been promised.

We want New Zealanders all over the motu to glow up and show up for rare to show the rare community that they are valued and deserve better support.

To do so we need your help to spread the word and rally your local schools, community groups and businesses to get behind this important campaign and show their support for rare.

Please visit our website for ideas and resources to help you plan an event or raise awareness of rare disorders over rare disease month.

Parent Guide Launch

We will be marking Rare Disease Day 2023 by launching our new Parent Guide, Raising a child with a rare disorder: A guide for parents living in Aotearoa New Zealand.

This guide has been developed by Rare Disorders NZ to help parents navigate the path in caring for a child with a rare disorder in Aotearoa New Zealand and will be available in electronic version on our website post the launch.

Rare Disorders NZ’s patron Her Excellency, The Right Honourable Dame Cindy Kiro, will be hosting the event at Government House, and we look forward to celebrating this occasion with invited families and members of the rare disorder community.

Trikafta Submission for people with cystic fibrosis (CF)

RDNZ provided feedback under Pharmac's consultation process on the proposal to fund Trikafta for people with cystic fibrosis (CF) aged 6 years and over from 1 April 2023. You can read our submission here.

Pharmac has announced that it is reviewing rule 8.1b of the Pharmaceutical Schedule

Pharmac is reviewing rule 8.1b of the Pharmaceutical schedule due to concerns around the increasing costs of new medicines, and that other groups, such as children with rare disorders, do not have the same funding access to medicines as those children with cancer.

Currently, rule 8.1b ensures all medicines to treat children with cancer in New Zealand is funded without needing an evaluation by Pharmac first. This is an exception to the usual funding process for medicines in New Zealand.

The only solution to making medicine access more equitable is to extend the rule to other conditions – reducing access to medicines for children with cancer CANNOT and MUST NOT be an option.

Pharmac is seeking feedback and Rare Disorders NZ will be submitting.

We strongly encourage others to do the same. You can access the submission form here. Consultation closes at 5pm on 27 March 2023.

You can read about our concerns of this review in our media release here.

COVID-19 Antivirals

In recent months we have had an increase in concern raised by those living with a rare disorder not being able to access Covid 19 anti-viral as they don’t meet the current criteria.

Rare Disorders NZ has written to Pharmac to ask for the Covid 19 anti-viral criteria to be widened to include those with a rare disorder.

Patient Voice Aotearoa

In December Rare Disorders New Zealand alongside some of our rare disorders support group leads attended the petition handover asking Pharmac to extend rule 8.1b so all children in New Zealand can have access to life-saving medicine.

In the media

Kiwi family moving to Australia to access treatment for son's rare disorder

Is rapid genome sequencing the next frontier in disease diagnosis?

How you can help us help those with rare disorders across New Zealand

By donating this Rare Disorders Month, you’re helping to bring the rare community out of the darkness, and into the light.

Your donation will go towards running our enquiries line, providing connection, guidance, advice and resources for 140+ support groups and representing the rare community’s voice at the highest levels to improve healthcare and wellbeing for people and their whānau living with a rare disorder.

To donate to Rare Disorders NZ visit our #GlowUpShowUp Givealittle page.

Donate

Become a regular donor to Rare Disorders NZ through One Percent Collective

Join us on social media.

Please help us to reach more New Zealanders, so more people understand about rare disorders, where to get help for those they know with a rare disorders and our campaign for better healthcare. There are several ways to do this, so please join us on

• LinkedIn
• Facebook 
• Twitter

Looking Ahead

Here are some things to look out for in the next couple of months:

• 28 February: Rare Disease Day
• 28 February: Rare Disorders NZ parent guide launch at Government House
• 28 February – 31 March: Rare Disorders Month 2023
• 2 March: Paintvine event Wellington
• 10 March: Rare Beer event Wellington and Auckland

Thank you

We would like to acknowledge and thank the following sponsors for funding key projects for us over the past two months.

• Lottery Minister’s Discretionary Fund
• One Percent Collective
• MSD – Care in the Community Disability Welfare Fund

Please get in touch if you have any questions relating to any articles in this newsletter or if you have anything you wish to discuss.

Kind regards,

The team at Rare Disorders NZ