Rare Disorders NZ

25/07/2025

Help us raise awareness about rare disorders in NZ!

Help us grow our reach on Facebook by inviting your Facebook friends to follow Rare Disorders NZ page. It only takes 5 clicks.

Here's How:
1. Go to Our Profile Page - www.facebook.com/RareDisordersNZ
2. Click on the Box with Three Dots
3. Select ‘Invite Friends’
4. Select All
5. Send Invite

It’s that easy! Thanks for your help with expanding our community!🧡

22/07/2025

Our CE Chris Higgins has been appointed to Pharmac’s new Consumer and Patient Working Group.

The group has been established for a 12-month period to support Pharmac’s reset programme, which aims to improve Pharmac’s transparency and relationship with consumers.

The group consists of ten consumer and patient representatives, with Dr. Malcolm Mulholland of Patient Voice Aotearoa selected as Chair.

Chris looks forward to working with this group to ensure the rare voice is heard and considered in the development of Pharmac’s new strategic vision and improved processes, and he will be regularly consulting with the support groups in our collective with an interest in Pharmac.

Read more via link in comments.

22/07/2025

Yesterday the Minister responsible for Pharmac, Hon David Seymour, released his Letter of Expectations (LoE) to Pharmac Chairperson Paula Bennett and we were pleased to see that the implementation of the Rare Disorders Strategy was explicitly mentioned.

Rare Disorders NZ wrote to the Minister in June requesting that he include a directive to action priorities outlined in the Rare Disorders Strategy, similar to the previous LoE.

We have continued to raise the profile of rare disorders at a government and ministerial level this year and we have appreciated constructive engagement with the Minister, with him attending our roundtable at parliament on diagnosis and medicine access, as well as hosting the inaugural meeting of the Cross Party Parliamentary Group on Rare and Undiagnosed Disorders.

Rare Disorders NZ looks forward to strengthening our engagement with Pharmac to improve access to rare disorders medicines.

21/07/2025

Share your rare

300,000 people in New Zealand have a rare disorder and their lives are diverse, inspirational and humbling.

We would love to share YOUR story as part of our Stories Project to help bring to light the reality of living with a rare disorder and help others going through a similar experience feel less alone.

You can share your story by filling in the Contact Us form on our website. Just state that you would like to share your story and tell us about your journey, including the highs and lows along the way.

When we receive your story, we will ask you for an accompanying photo to feature on our website.

Thank you for helping to raise awareness of living with a rare disorder.

16/07/2025

Giving through your Will is more than passing on wealth. It’s an act of generosity that nurtures people and communities, creating lasting, positive change.

Leaving a gift in your Will to Rare Disorders NZ means investing in the future of those affected by rare disorders.

Contact us at enquiries@raredisorders.org.nz to get a 20% discount on new basic, standard and comprehensive Wills online through Public Trust.

16/07/2025

Caring for a child with a rare disorder is a unique experience that can be challenging. Between waiting for a diagnosis, adjusting to a new way of life, and coping with ongoing uncertainty, it can feel like an emotional roller-coaster ride.

But while the journey can be demanding, it is important to remember that there is a way forward.

Our caregiver guide has insights and advice from parents and caregivers who share this journey, as well as information and resources that may help along the way.

You can download the guide via the link in comments.

13/07/2025

This week is Wills Week – a good time to make sure your Will is up to date and to reflect on the legacy you would like to leave beyond your lifetime.

Have you ever considered leaving a gift in your Will? By leaving a gift your values will live on, ensuring the causes and communities closest to your heart thrive beyond your lifetime.

After caring for your whānau and friends, we ask you to consider leaving a gift in your will for Rare Disorders NZ to help the rare disorder community for generations to come.

Public Trust is offering a 20% discount on new basic, standard and comprehensive Wills online for Rare Disorders NZ supporters.🧡

Contact us at enquiries@raredisorders.org.nz to receive the discount code.

09/07/2025

Have you ever thought about leaving a lasting legacy for the rare disorder community in your Will but unsure how to go about this?

Join Public Trust’s panel of experts on Thursday 17 July for a free live webinar on the importance of having an updated Will and explore the various options for including a gift for your chosen charity.

Questions during this informative and interactive lunchtime session are welcome.

03/07/2025

Do you have any ideas on how the health service could improve?

Do you have difficulties accessing the services you need?

Or you might have health and wellbeing needs that are going unmet?

An interdisciplinary research team from Auckland University of Technology, the University of Auckland, Massey University, and the University of Otago, are seeking healthcare consumers and allied health professionals to help shape the future of healthcare services. This study aims to come up with innovative ideas that meet the health and wellbeing needs of the New Zealand public.

They will be holding a series of workshops/wānanga in four locations (Auckland, Rotorua, Wellington and Dunedin). Each participant will be asked to attend all three workshops in their local area, each held one month apart (July -October). Workshops will be held in the afternoon/evening (approximately 4 hours long), and food and refreshments will be provided at break times.

If you are interested in sharing your experiences of the health service and/or your health and wellbeing needs, please join.

Click the link in comments to find out more or contact the project manager, Josie Tait, at josie.tait@aut.ac.nz

02/07/2025

We're so grateful to Panhead Custom Ales for raising an additional $263 for Rare Disorders NZ through selling their rare beer release throughout March and donations through their bar.

Cheers Panhead Custom Ales! Your support is very much appreciated!

Panhead Custom Ales x Gladfield Malt
Heart of Ouro – Mate Catharina Sour - A Rare Beer Challenge 2025 Release

It’s time to join the Panhead Custom Ales Crew as we welcome you on a road trip to the lost city of El Dorado - all to raise a glass and more importantly awareness for the three hundred thousand plus lives living with Rare Disorders NZ in Aotearoa.

A seldomly seen sour style from Santa Catarina, Brazil, we’ve brewed up a bright, funky kettle sour packed full of juicy, sweet Guava and then added in Yerba Maté for some herbaceous Latin love. El Dorado hops round off the beer with a touch of fruity, balanced bitterness. Big thanks to the team at Gladfield Malt for helping us brew this tropical treat with their kind grain donation – legends!

First pours of this adventurous Custom Ale (stretching from Upper Hutt to the Amazon) will be exclusively at The NZ Rare Beer Challenge – Fortune Favours - Wellington , and at 16 TUN and Smoke Ashburton - Auckland on Friday 7 March.

Can't make it to the first pour? Then please join us at the Panhead Tasting Room - Upper Hutt from March 8th and grab a pint of Heart of Ouro. We’ll be donating $2 from every pint of our Rare Beer Release sold throughout March. One off donations can also be made via the bar - donate $10+ and walk home with a wee bit of Panhead history, perfect for a mancave or garage!

27/06/2025

Today is International Neonatal Screening Day. New Zealand has a very successful and highly regarded Newborn Metabolic Screening Programme, screening almost all newborn babies around 24 hours after birth for over 20 rare disorders .

Approximately 60 babies a year are diagnosed with a rare disorder through the programme, enabling them to access the right care and early treatment before the disorder causes serious disability or even death.

Rare Disorders NZ has played an influential role in the expansion of the newborn screening programme over the years, and we will continue to advocate for this successful programme's continued expansion.

26/06/2025

Voting closes this Monday June 30th at MyGivingCircle and we could be sharing in a $95,000 grant with your help at https://mygivingcircle.org/rare-disorders-new-zealand/vote

All we need to do is finish as a Top #10 New Zealand charity to get a grant.

Please vote for us for free before June 30th at https://mygivingcircle.org/rare-disorders-new-zealand/vote and share this post so others can vote as well.

Thank you so much for your help!

Each year MyGivingCircle gives away $500,000