Latest news
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Covid-19 ; Breaking News - Hopeful New Treatment for PID patients - Developed by Kiwi Scientists
June 29, 2020
A new drug developed in NZ has been successfully tested and shown to be effective against SARS-CoV-2 in the laboratory; an important step before commencing human clinical trials.
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Fair for Rare ; Make your Voice count
June 19, 2020
“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Helen Clark, United NationsFair for Rare is a call for the New Zealand government to take rare diseases seriously to ensure ...
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World Blood Donor Day 2020
June 13, 2020
IDFNZ is proud to join the New Zealand Blood Service to give thanks to all of our amazing blood and plasma donors.Harry McPhail says it all on behalf of IDFNZ members from all over New Zealand !https://vimeo.com/341464460https://www.nzblood.co.nz/give-blood/world-blood-donor-day/ On World Blood Donor Day (WBDD), we want to say ...
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Positive Parenting in Uncertain Times. Part 11; Don't get complacent
May 29, 2020
Don’t get complacent As a country New Zealand is doing a great job regarding keeping the numbers down in relation to COVID 19, we have moved from Alert level 4 down to level 2 in a relatively short space in time and now we can ...
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Positive Parenting in Uncertain Times. Part 10; Covid -19 Grief The 'New Norm'
May 28, 2020
Grief – In relation to Covid 19 – The ‘New Norm’Grief doesn’t just occur in relation to when someone dies. Grief can occur during ‘change’. Often grief can appear worse when those changes are still visual, when you know that person is there, but you can’t ...
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Positive Parenting in Uncertain Times. Part 9; Resilience
May 26, 2020
Your children will be hearing the word ‘resilience’ a lot. .....'You have been so resilient during this time'. ......'Lock down has supported us to find better ways to become resilient'. ......'This is a time to become resilient'. But what does that word mean to your ...
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Positive Parenting in Uncertain Times. Part 8: PPE ;What’s that look like in the eyes of your child?
May 20, 2020
Personal Protective Equipment (PPE) – What’s that look like in the eyes of your child? For many week’s your children have been hearing those three letters PPE. What does it stand for? What does Personal Protective Equipment do? Why are the children seeing their ...
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Positive Parenting in Uncertain Times.Part 7: Bursting the Bubble
May 19, 2020
Bursting the Bubble Well, we are in Level 2 – we’ve all been told we can ‘burst our bubbles’. Step away from the protective shield that we have been in for over 8 weeks. It’s a bit like a ‘Marvel’ movie. The attack of Covid ...
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Positive Parenting in Uncertain Times.Part 6 : Those Mood Changes
May 15, 2020
Those mood changes Cabin Fever has set in now what about those mood changes? How do you support your child or young person whose mood has changed, they are feeling ‘down, depressed, sad, mah’ Children and young people are adapting to home schooling, you are ...
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Positive Parenting in Uncertain Times.Part 4: What is There To Worry About?
May 12, 2020
‘What is there to worry about’? For those living with a child whose immune system is immunosuppressed, waiting or recovering from transplants, I can only imagine what you and your child/ren are going through and feeling during Level 3 of lockdown. Those that have children ...
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Positive Parenting in Uncertain Times.Part 5 : Cabin Fever
May 12, 2020
Cabin Fever – are you feeling trapped? The past seven weeks it’s been a little bit like being on a cruise ship, (bear with me) you’ve had your cabin (your bedroom) you have had your ship (your house) you have had your deck to walk ...
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Positive Parenting in Uncertain Times.Part 3 ‘When Worries turn to Anxiety’
May 7, 2020
It’s more than ‘just’ Butterflies in my Tummy ‘When Worries turn to Anxiety’ During Covid 19 and the Lockdown, level 2, level 3 and level 4 your children would have been worrying, maybe just a little, maybe a lot. Those worries may have felt like ...
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Positive Parenting in Uncertain Times. Part 2 The Emotional Rollercoaster
May 5, 2020
‘The Roller Coaster of Emotions’By Debbie MillsYour children are on a roller coaster now – The roller coaster of emotions.As parents or caregivers, you have not chosen for your child/ren or yourselves to be on this ride. You haven’t queued and payed to get on ...
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COVID Rare Disease Patient Survey
May 1, 2020
COVID-19 Survey – Please take 10 minutes to complete the Rare Barometer survey. This is an opportunity to make your voice heard. This survey is essential for the rare disease community. It will enable measurement of how the virus is affecting rare disease patients’ lives and enable communication of ...
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Positive Parenting in Uncertain Times. Part 1 CHANGE
April 30, 2020
Positive Parenting in Uncertain Times : Part 1 - CHANGE Parenting Support through COVID - 9 Parenting an anxious, immune compromised child through the stress of COVID-19 Lockdown can be very challenging.Help is now here with practical professional advice from Debbie Mills (play therapist / ...
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Positive Parenting in Uncertain Times. Part 12
April 6, 2020
The ‘New Norm’ – How’s it going? I’m not normally an anxious person, my three children are healthy, yet I found myself last week struggling with the ‘New Norm’. Suddenly the ‘families’ that were seen out biking and walking for exercise isn’t as obvious, people ...
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PI WEEK 2020
March 27, 2020
PI Week 2020 Changing the lives of Kiwis living with undiagnosed Primary Immune Deficiency (PID) Disorders. There are now 430 recognised types of PID; although considered “rare” in the population, they can be life threatening and cause chronic ill health for those affected. Thousands of Kiwis ...
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Meet Stella - the First Kiwi Baby diagnosed with SCID via New born testing in New Zealand
March 27, 2020
In 2018, IDFNZ Patient member Stella Oprwood became the first Kiwi baby to be diagnosed with severe combined immune deficiency through the newborn metabolic screening programme. As a result, Stella’s health condition was able to be carefully managed by doctors before she suffered serious infection; ...
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CORONAVIRUS COVID-19
Feb. 26, 2020
LATEST NEWS:New Zealand moves to Alert level 1 from 11.59pm October 7thVisit https://covid19.govt.nz/alert-system/alert-level-1/ for MOH information COVID – 19 Updates for IDFNZ Patient Members: IDFNZ and KIDS Foundation members - please don't feel you are alone even when you may be isolated at home; IDFNZ support services will continue ...