Rare Disorders NZ: October Update

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In this issue. 

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: 

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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!

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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.

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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

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Health Select Committee Hearing

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The Medicine Gap

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Upcoming

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

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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:

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Stay Safe the team at Rare Disorders NZ.

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