Rare Disorders NZ: August Update

In this issue:

• Initial meeting with Ministry on new National Strategy for Rare Disorders; 
• Rare Disorders NZ response to latest Pharmac update on Trikafta assessment; 
• Helping GPs become more ‘Rare Aware’; 
• Collective continues to grow; 
• Video in GP clinics; 
• Wellington Airport Regional Community Awards; 
• Cycle success for Fragile X and Rare Disorders NZ; 
• One Percent Collective; 
• Thank you to sponsors.

CE Update

It’s such a privilege to take up the role of CE Rare Disorders NZ. I have spent the last few weeks getting to know the team here at Rare Disorders NZ and some of our community. I intend to do more of this over the coming weeks and months. I am excited for the work that is ahead of us; I’m sure there will be challenges but also lots of opportunity to make a difference and improve the health and wellbeing sector and services for those with rare disorders.

I’d like to take this opportunity to thank our rare disorders community for all for your efforts in your advocacy and lobbying to date to achieve the outcome from the Pharmac Review of a National Strategy for Rare Disorders. And now we commence together the hard work to ensure this is achieved with co-design and co-production. I look forward to working with you all on this.

I’d also like to say thank you to Lisa Foster; through her leadership and hard work, Lisa has handed the organisation to me in good position and I know you will all join with me in thanking Lisa for her work.

Please don’t hesitate to reach out to me if there is anything you feel I or the organisation can be of support to you with. I look forward to working with you all.

Ngā mihi,

Michelle Arrowsmith

CE, Rare Disorders NZ

Initial meeting with Ministry on new National Strategy for Rare Disorders

Earlier this month, we were pleased to attend our first meeting with the Ministry of Health team charged with developing a National Strategy for Rare Disorders, as directed by the Minister of Health following the release of the Pharmac Review. This initial meeting was to gauge the plan going forward from the Ministry’s perspective and to express our expectations, particularly that we expect a Strategy for Rare Disorders to be “by the people for the people”. We look forward to further engagements with the Ministry during this process to ensure the strategy is developed in a timely and participatory manner.

Rare Disorders NZ response to latest Pharmac update on Trikafta assessment

While we were pleased to learn that Pharmac’s Pharmacology and Therapeutics Advisory Committee (PTAC) now also recommends that the life-saving drug Trikafta should be funded for eligible people with cystic fibrosis for the age group 6 years and older after reviewing new evidence and information, we were disappointed that they continue to only afford Trikfata medium priority, despite Pharmac’s Respiratory Advisory Committee’s high priority ranking.

Read our full statement here. 

Helping GPs become more ‘Rare Aware’

Following the success of our workshop on rare disorders at GP CME North – the largest gathering of GPs, Registrars, Registered Nurses and Practice Managers from across the North Island, we conducted a large mail-out of our ‘Rare Aware’ flyer to all GPs across the motu, and ensured each delegate at GP CME South in August also received our flyer in their delegate bag. These initiatives are all part of our work to encourage health practitioners to be more ‘Rare Aware’ and to understand the unique challenges that their rare patients face.

You can download the flyer from our website here. 

Collective continues to grow

We are pleased to have recently welcomed three new support groups to our collective:

• Kawasaki Disease New Zealand
• NZ Autoinflammatory & Periodic Fever Syndromes
• Churg Strauss (EPGA) Eosinophilic Granulomatosis with Polyangiitis New Zealand
• International Waldenströms Macroglobulinemia Federation NZ (IWMF)

That brings us to a current total of 140 rare disorder support groups in our collective. If you would like to know more about these groups, or if you know of any rare disorder support groups who you think might be interested in connecting with us, please get in touch at enquiries@raredisorders.org.nz.

View our full list of support groups here.

Video in GP clinics

During this week and next, our awareness video about Rare Disorders NZ will again be played in GP clinic waiting rooms around the motu. The aim of the video is to let people affected by rare conditions know that we are here for them and can offer advice and support. Last time we did this in February, our video reached an estimated 400.000 people over the two weeks it played!

To view the video, click here.  

Wellington Airport Regional Community Awards

We enjoyed a great evening at the Wellington Airport Regional Community Awards as finalists in the Health and Wellbeing category, and we were blown away by the amazing mahi going on in the Wellington community by all of the finalists. Congratulations to the Supreme Winner Ekta New Zealand Inc for their work building an inclusive Aotearoa that unites people, supports vulnerable communities, and enables people to engage in everyday activities comfortably.

One Percent Collective

We are really excited to be one of One Percent Collective’s newest partner charities. One Percent Collective makes it super-easy to donate regularly to any of its partner charities, so that we can spend less time fundraising, and more time working to improve the lives of the people of Aotearoa New Zealand. We get 100% of donated funds with no strings attached and One Percent Collective handles all the admin. Donors will NEVER be spammed with anything unimportant and will NEVER be asked to increase donations or make extra payments.

Find out more about how to donate regularly to Rare Disorders NZ through One Percent Collective here.

For other ways to donate to Rare Disorders NZ click here. 

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
• Frimley Foundation 
• COGS - Community Organisation Grants Scheme
• Foundation North

The team at Rare Disorders NZ

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