Oct 13, 2021, 10:43 AM

In this issue. 

  • International Children's Day Colouring Competition
  • Health Select Committee Hearing
  • Wellington Rare Disorder Catchup
  • The Medicine Gap
  • COVID Vaccine Update

Fair for Rare NZ Chief Executive update

It is certainly a bumpy ride for many of us with ongoing uncertainty and pressure leading to feelings of fatigue and weariness. The impact on our community is intense and not feeling alone is so important at this time; we want you to know we are here to help in anyway that we can despite our limitations of resources. Sadly, we had to cancel our plans for a meet-up in Auckland with our support group leads which was very disappointing. We are all hoping for steadier times ahead.

We have been informed there is no current release date for the Interim Report of the Pharmac Review Panel, and the release may be delayed until next year.

Rare Disorders NZ have been sharing information on international models, evidence and reports to highlight medicine access pathways for rare disorders can work and offer equity. 

Some key areas of focus during the past few months include: 

  • Ongoing communication with Minister of Health, Hon Andrew Little, Act Party Deputy Leader Brooke Van Velden and Disability Rights Commissioner Paula Tesoreiro regarding recognition of people with rare disorders as a distinct community deserving of respect
  • CE Lisa spoke at Rare Cancer Australia Workshop (Pinnacles) on ‘Importance and role of patient organisations in shaping health systems”
  • Rare Disorders is now on the Health Navigator website which provides one place for New Zealanders to find reliable and trustworthy health information and self-care resources.
  • Lisa was proud to be included as a presenter, along with one of our group leaders Samantha Lenik for Pompe Network, at a 3-day American Global Genes Patient Conference focusing on New Zealand’s lack of progress in relation to equity for those with rare disorders

The importance of being acknowledged as a community with visibility of the needs for people impacted by rare disorders has never been as important particularly during a time of Health Reform – and RDNZ will be continuing to raise awareness with leaders of the Transition Unit as our health reform does not magically solve systemic discrimination towards people with rare conditions – that only comes from listening to those who face it. Lets be heard!  

Nag mihi
Lisa Foster


International Children's Day Colouring Competition

Keep your kids entertained with our cool Colouring Competition, open to ‘friends of’ and siblings too. Plus there are some awesome Smiggle vouchers up for grabs!

Perhaps that’s the reason that, if you ask me why I’m in politics, my answer will be simple: children,” said Ardern, “I feel a huge duty of care to the most vulnerable and genuinely believe that our success as leaders depends on no lesser standard than the well-being of children,” she said.

With Jacinda Ardern’s hopes for New Zealand to be the best place in the world to be a child, we wanted to raise the focus on our amazing, rare children, So as part of our broader call for a National Framework for rare disorders Fair for Rare campaign, we will highlight International Children’s Day which takes place on Saturday 20 November 2021 and is running a colouring competition for young and old with the chance to win multiple Smiggle vouchers

We’re also asking you to include a message for our Prime Minister, Jacinda Ardern about what it means to have a rare disorder. These will be handed to Dr Liz Craig MP and chair of the Health Select Committee who we have asked to hand directly to the Prime Minister.

You can find out more about our colouring competition on our website




If you are in Wellington please join the Rare Disorders NZ team for a cuppa and catchup. 

Following some time to connect with others and learn more about what we have been up to, we will also take this opportunity to hand over the entries to our Fair for Rare colouring competition enters to Dr Liz Craig who will attend this event

Date: Friday 19 November 2021
Time: 10:30 - 12pm

To find out more details and RSVP please visit our website.


22 Great New Zealand rides for Rare Disorders NZ
80 year old Jim is cycling 22 Great New Zealand rides from the top of the North Island to the bottom of the South Island. A total of 2345km over 45 days!
Jim has three grandchildren with Fragile X and is raising awareness and much-needed funds for Fragile X and Rare Disorders NZ.


Lisa Rare Disorders NZ CE and Jim meet up in Graytown
You can help support and donate here and you can follow Jim as he goes.

Health Select Committee Hearing

Rare Disorders NZ is disappointed to receive a response from the Ministry of Health dismissing our collective call for a rare disorder’s national framework you can read the response on our website

Unfortunately, due to the latest COVID lockdown, our Health Select Committee Hearing was postponed. We will keep you informed once we have a new date.

As part of the petition process, RDNZ and Sue Haldane have the opportunity for a 15minute oral submission to the Health Select Committee about our call for a National Framework for Rare Disorders. You can read our submission to the Health select committee here.


The Medicine Gap

A massive thank you to our Rare disorder support groups SMA, Amyloidosis and Duchenne Muscular Dystrophy, The Pompe Network and members of our community for taking part in the Medicine Gap we know how hard it is to put your stores out there and yet it is extremely powerful at pushing for positive change. Watch out over the coming weeks for more stories.  https://themedicinegap.co.nz/ 


Upcoming

If you have any questions or would like further information, please let us know

  • Ministry of Health meeting on Diagnosis for rare disorders
  • Watch out for our bi-annual Voice of Rare Disorder Survey coming out soon. As no rare disorder data is collected in New Zealand, the data from this survey is invaluable for our ongoing Fair for Rare campaign and we would encourage as many people with a rare disorder to complete it to help with our campaign.
  • Submission to the 10yr disability survey. Rare Disorder NZ will be making a submission and working with our 115 rare disorder support groups to help them make a submission to make sure the voice of the rare disorder community is included in this survey.

Welcome to Maurice Rare Disorder NZ Grants writer

We are very excited to have Maurice Roberts join the RDNZ Team he comes from a solid background in grant writing including The Wellington City Mission and Arthritis NZ, and a host of other charitable trusts as a volunteer. He has a degree in economics, and brings a macro and micro lens to his grant writing. He greatly enjoys working with the funders as they are keen to work with organisations in our local communities and together we make a difference. To relax he loves playing golf, and is a member at Miramar links – he is very open to discussing his role over 18 holes.


COVID Vaccine Update:

Please visit our website to find the latest information on the COVID-19 vaccination for the rare disorder’s community. We are keeping this page updated with all the latest information. 

 


Stay Safe the team at Rare Disorders NZ.

PS If you would like to hear more about what we are up to like us on Facebook

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