The Conversation

What is a rare disease? It's not as simple as it sounds

26-02-2020 Author: Yvonne Zurynski, Associate Professor of Health System Sustainability, Australian Institute of Health Innovation, Macquarie University

Shutterstock

If you have a rare disease, you may be the only person in Australia with that condition.

You may not know, however, that being diagnosed with a rare disease means you are part of a community of up to two million Australians with one of these conditions. And more than 300 million people globally.

Read more: When you're sick,...

More...

Page 556 of 27002

The Conversation

Sustainable Erosion Control Strategies for Australia's Environment
Erosion control stands as a paramount concern in Australia, particularly amidst the backdr…
Generate More ROI by Properly Equipping Your Call Center
Small and mid-sized businesses (SMBs) seek to increase their ROI without losing a lot of m…
Coronavirus highlights the painful political truth about health inequality. Is social democracy the answer?
AAP/EPA/Ciro FuscoHealth inequality was a major concern of 20th century social democrats i…
Friday essay: today's grandmothers grew up protesting. Now they have nothing to lose
Rod Long/Unsplash, CC BYGrandmothers as social activists? What a radical idea … but…
Forget old screen 'time' rules during coronavirus. Here's what you should focus on instead
ShutterstockCOVID-19 has left parents grappling with the challenges of online learning, en…
Coronavirus an ‘existential threat’ to Africa and her crowded slums
David Sanderson, Author providedThe head of the Africa Centres for Disease Control and Pre…
What a simulated Mars mission taught me about food waste
George Frey/EPAAs a food waste researcher, I’m interested in how humans prepare food…
With everyone stuck indoors, esports is poised for its time in the sun
Against a global backdrop of cancelled sports leagues, and as part of their season opening…
Open or else face funding cut – Minister Tehan's edict to independent schools
Education Minister Dan Tehan has warned non-government schools that if they fail to open f…
Australia's coronavirus debate turns to the way out
Remember how last year’s Easter felt bizarre because the country was in election mod…
Politics with Michelle Grattan: MPs Tim Watts, Fiona Martin, Clare O'Neil and Helen Haines talk about serving their electorates during…
Michelle Grattan talks with MPs Tim Watts (Gellibrand, Victoria), Fiona Martin (Reid, NSW)…
VIDEO: Michelle Grattan on Australia's exit out of coronavirus restrictions
Michelle Grattan talks with Assistant Professor Caroline Fisher (remotely) about the week …
Coronavirus: what causes a 'second wave' of disease outbreak, and could we see this in Australia?
ShutterstockFollowing the emergence and rapid spread of COVID-19, several countries have s…
What to do if you've been fined for breaching coronavirus restrictions
The message to everyone during the coronavirus pandemic is to stay at home and only leave …
The coronavirus lockdown might help limit this year's flu season – but you should still get your flu jab anyway
ShutterstockLockdown measures aimed at limiting the spread of COVID-19 should actually hel…
Easter eggs can bring a little 'normality' to kids in isolation. But should we ration them or let kids eat…
ShutterstockThis Easter will be especially challenging, with family isolation and many par…
Scientific modelling is steering our response to coronavirus. But what is scientific modelling?
As they released the modelling of the COVID-19 pandemic behind Australia’s social is…
Teachers could be called on to estimate year 12 student grades – this is fairer than it sounds
Following a meeting with states and territories, federal education minister, Dan Tehan sai…
Personalities that thrive in isolation and what we can all learn from time alone
Anthony Tran/Unsplash, CC BY-SAThe coronavirus pandemic has caused tens of thousands of de…
The psychology of lockdown suggests sticking to rules gets harder the longer it continues
ShutterstockThe COVID-19 pandemic has forced millions of people to live under strict lockd…
Most laws ignore ‘human-wildlife conflict’. This makes us vulnerable to pandemics
ShutterstockNever before have we seen how the human use of wildlife can yield such catastr…
Could coronavirus bring back our faith in experts?
The Conversation/Wes Mountain, CC BY-SAIn recent years an ugly hostility to experts has be…
From the bushfires to coronavirus, our old 'normal' is gone forever. So what's next?
The world faces profound disruption. For Australians who lived through the most horrific f…
Great time to try: cleaning the house (while fitting in a workout)
Jan Kopřiva/UnsplashThe washing, drying, ironing, airing, pushing baby in his pram &n…
Vital Signs: a lesson from game theory the coronavirus contrarians ignore
ShutterstockIt has been said we are “at war” with the COVID-19 coronavirus. I&…
Pell decision: why sexual offence trials often result in acquittal, even with credible witnesses
ShutterstockA distinctive feature of the prosecution of Cardinal George Pell is that the f…
Pandemic policing needs to be done with the public's trust, not confusion
The law on what we can and can’t do during the coronavirus outbreak is changing on a…
As use of digital platforms surges, we'll need stronger global efforts to protect human rights online
ShutterstockAs millions of people are moving work and social interactions online to protec…
Without international students, Australia's universities will downsize – and some might collapse altogether
ShutterstockThe loss of international students due to COVID-19 restrictions, and predicted…
Does JK Rowling's breathing technique cure the coronavirus? No, it could help spread it
Harry Potter author JK Rowling says a breathing technique has helped her coronavirus-like …
Should everyone be wearing face masks? It's complicated
ShutterstockShould members of the public be wearing face masks during the COVID-19 pandemi…
The coronavirus ban on elective surgeries might show us many people can avoid going under the knife
ShutterstockAs part of the government’s response to the COVID-19 pandemic, all elect…
Time well spent, not wasted: video games are boosting well-being during the coronavirus lockdown
ShutterstockThe same week social distancing measures were announced in Australia (March 16…
I'm an asthmatic: what should I do during the coronavirus pandemic?
ShutterstockThe new respiratory coronavirus COVID-19 is particularly worrying for the 2.7 …
What governments can do about the increase in family violence due to coronavirus
ShutterstockTackling a health crisis such as COVID-19, with society in lockdown can’…
Where the wild things are: how nature might respond as coronavirus keeps humans indoors
AP NewsIntriguing things sometimes happen in places deserted by people. Plants creep back,…
Rents can and should be reduced or suspended for the coronavirus pandemic
ShutterstockThe National Cabinet announced a moratorium on evictions just over a week ago …
We're not all in this together. Messages about social distancing need the right cultural fit
Governments everywhere face the challenge of getting people to stay home so they can limit…
Yes, we're flattening the coronavirus curve but modelling needs to inform how we start easing restrictions
ShutterstockAustralia is on track to flatten the curve of coronavirus cases, which will al…
Courts are moving to video during coronavirus, but research shows it's hard to get a fair trial remotely
Erin Nealey/FlickrIn the past, the courts were ideal breeding grounds for spreading diseas…
Now we're in lockdown, how can we get out? 4 scenarios to prevent a second wave
shutterstock/The ConversationAustralia is effectively in lockdown. Public gatherings of mo…
5 big environment stories you probably missed while you've been watching coronavirus
ShutterstockGood news: COVID-19 is not the only thing going on right now!Bad news: while w…
Indonesia was in denial over coronavirus. Now it may be facing a looming disaster
HOTLI SIMANJUNTAK/EPAAlmost no one thinks Indonesia is handling the COVID-19 pandemic well…
Lack of help for local councils in coronavirus package undercuts industry support
The Warrick Lane redevelopment is a major construction project overseen by local governmen…
50 years of bold predictions about remote work: it isn't all about technology
Archives of Ontario, CC BYIf you’re working from home for the first time, you might …
Book review: The Dictionary of Lost Words by Pip Williams
Quotation slips for the first Oxford English Dictionary. Owen McKnight/Flickr, CC BY-SAWhe…
Traffic jams are contagious. Understanding how they spread can help make them less common
Traffic jams may have disappeared from our roads as people stay home during the COVID-19 p…
Scott Morrison indicates 'eliminating' COVID-19 would come at too high a cost
Scott Morrison has made clear his view that any attempt to eliminate COVID-19 entirely in …
No, 5G radiation doesn't cause or spread the coronavirus. Saying it does is destructive
ShutterstockA conspiracy theory claiming 5G can spread the coronavirus is making the round…
The jury may be out on the jury system after George Pell's successful appeal
Shutterstock/sirtravelalotThe High Court today quashed the conviction of Cardinal George P…
For older people and those with chronic health conditions, staying active at home is extra important – here's how
Fitbit recently released data showing a global decrease in physical activity levels among …
Coronavirus: as culture moves online, regional organisations need help bridging the digital divide
Museums, galleries and artist collectives around the world are shutting their doors and mo…
JobKeeper is quick, dirty and effective: there was no time to make it perfect
ShutterstockNo Australian government has ever spent A$130 billion so quickly. Last Tuesday…
Why temporary migrants need JobKeeper
ShutterstockThe centerpiece of the Commonwealth government’s COVID-19 economic stimu…
Turning to Easter eggs to get through these dark times? Here's the bitter truth about chocolate
PxfuelThe coronavirus might make Easter celebrations a little subdued this year, but that …
How George Pell won in the High Court on a legal technicality
Erik Anderson/AAPThe High Court today granted Cardinal George Pell special leave to appeal…
US private schools often inflate student grades. This could happen in Australia if we cancel year 12 exams
ShutterstockThe unfolding COVID-19 situation has brought many changes to school education.…
ICU ventilators: what they are, how they work and why it's hard to make more
ShutterstockAround the world, people are racing to design and manufacture much-needed vent…
More Australians are worried about a recession and an increasingly selfish society than about coronavirus itself
Joel Carratt/AAPMore Australians are worried about the longer-lasting, societal effects of…
The bar necessities: 5 ways to understand coronavirus graphs
Wrapping your head around the scale of a global pandemic is not easy, and the volume of st…
We just spent two weeks surveying the Great Barrier Reef. What we saw was an utter tragedy
Author supplied The Australian summer just gone will be remembered as the moment when huma…
The mushroom cloud's silver lining: how the Cold War is helping the biggest fish in the sea
United States Department of Defense/WikimediaIt might surprise you to learn that nuclear b…
Why coronavirus impacts are devastating for international students in private rental housing
Aliko Sunawang/Unsplash, FALAbout half of international students in Australia are private …
Open letter to the prime minister: extend coronavirus support to temporary workers
ShutterstockMany temporary Australian residents will be excluded from the JobSeeker Paymen…
Head lice drug Ivermectin is being tested as a possible coronavirus treatment, but that's no reason to buy it
ShutterstockResearchers testing the head lice drug Ivermectin as a possible treatment for …
Morrison sees massive ratings surge in Newspoll over coronavirus crisis; Trump also improves
Lukas Coch/AAPThis week’s Newspoll, conducted April 1-3 from a sample of 1,508 peopl…
A coronavirus spike may put ICU beds in short supply. But that doesn't mean the elderly shouldn't get them
ShutterstockAlthough recent encouraging news suggests the rate of new coronavirus cases in…
Coronavirus support packages will reshape the future economy, and that presents an opportunity
ShutterstockGovernments across the world have rolled out extensive financial packages to s…
How do viruses mutate and jump species? And why are 'spillovers' becoming more common?
ShutterstockViruses are little more than parasitic fragments of RNA or DNA. Despite this, …
Guide to the Classics: Albert Camus' The Plague
Some weeks ago, I got an email from a student who had returned to Northern Italy over Chri…
It is necessary to worry about health, but pessimism about the economy will hurt us
ShutterstockDuring this pandemic, our twin health and economic crises require two differen…
Three reasons why Jacinda Ardern's coronavirus response has been a masterclass in crisis leadership
Jacinda Ardern/FacebookImagine, if you can, what it’s like to make decisions on whic…
What if I can't pay my rent? These are the options for rent relief in Australia
You’ve lost income because of the coronavirus crisis and finding it hard to pay the …
Great time to try: 5½ ways to make movie masterpieces at home
Rear Window (1954)IMDBBeing in isolation might be a great time to try something new. In th…
Sorry to disappoint climate deniers, but coronavirus makes the low-carbon transition more urgent
Pixabay Climate deniers have been hanging out for the United Nations’ next big summi…
During the Great Depression, many newspapers betrayed their readers. Some are doing it again now
Wes Mountain/The Conversation, CC BY-NDMany newspapers betrayed their readers during the G…
'Stupid coronavirus!' In uncertain times, we can help children through mindfulness and play
Shutterstock“Stupid coronavirus!” I heard my six-year-old mumble while talking…
'Zoombombers' want to troll your online meetings. Here's how to stop them
StanWilliams/Pixabay, Author provided“Zoombombing” in case you haven’t h…
Can I visit my boyfriend or my parents? Go fishing or bushwalking? Coronavirus rules in the Northern Territory and Tasmania
ShutterstockEditor’s note: The following is current as at April 3, 2020. Things are …
Can I visit my boyfriend or my parents? Go fishing or bushwalking? Coronavirus rules in Western Australia
Shutterstock/IncEditor’s note: The following is current as at April 3, 2020. Things …
What does the coronavirus pandemic sound like? The voices of people struggling, secluding and surviving around the world
What does the COVID-19 pandemic sound like?For this episode, Dallas Rogers – a senio…
Look who's talking: Australia's telcos, banks and supermarkets granted exemption to cartel laws
Shutterstock“People of the same trade seldom meet together, even for merriment and d…
Young people are anxious about coronavirus. Political leaders need to talk with them, not at them
ShutterstockYoung people in Australia are among the fastest-growing group to contract COVI…
Sleep won't cure the coronavirus but it can help our bodies fight it
ShutterstockGetting a good night’s sleep can be difficult at the best of times. But …
Can I visit my boyfriend? My parents? Go fishing or bushwalking? Coronavirus rules in the ACT and South Australia explained
Flickr/Chris Fithall, CC BYEditor’s note: this article adds to the information we al…
This lizard lays eggs and gives live birth. We think it's undergoing a major evolutionary transition
Nicholas Wu, Author providedOur earliest vertebrate (animals with backbones) ancestors lai…
Vale Bruce Dawe, Australia's 'Poet of Suburbia'
Lennon Cheng/Unsplash, CC BY“Katrina, I had in mind a prayer, but only this came,&rd…
While we fixate on coronavirus, Earth is hurtling towards a catastrophe worse than the dinosaur extinction
Pixabay At several points in the history of our planet, increasing amounts of carbon dioxi…
Thanks to coronavirus, Scott Morrison will become a significant prime minister
One of Australia’s preeminent historians, Stuart Macintyre, once observed of John Cu…
Friday essay: mom jeans and nostalgia in a time of uncertainty
Jornada Produtora/Unsplash, CC BYTimes of instability and crisis produce increased nostalg…
Automatic doors: the simple technology that could help stop coronavirus spreading
New research the New England Journal of Medicine suggests that SARS CoV 2, which causes th…
Vital Signs: Scott Morrison is steering in the right direction, but we're going to need a bigger boat
The Australian government’s JobKeeper wage subsidy, estimated to cost A$130 billion,…
It is necessary to worry about health, but pessimism about the economy will hurt us
ShutterstockDuring this pandemic, our twin health and economic crises require two differen…
Grattan on Friday: Imagine if we could extract a permanent vaccine against hyper-partisanship from COVID-19
As the COVID-19 transforms our individual lives, we are learning a few new things about ou…
Where are we at with developing a vaccine for coronavirus?
ShutterstockSARS-CoV-2, the virus that causes COVID-19, is changing how we live. With a ra…
Democracy 2025 - How does Australia compare: what makes a leading democracy? With Michelle Grattan, Mark Evans and Ian Chubb
In this special hour long podcast presented by Mark Evans, professor of governance and dir…
Morrison has rescued childcare from COVID-19 collapse – but the details are still murky
ShutterstockPrime Minister Scott Morrison has announced free childcare for more than one m…
Free child care to help nearly one million families, especially workers in essential services
The government will provide free child care in a move aimed at ensuring parents, especiall…
Who can get tested for coronavirus?
To control the spread of COVID-19 we need to identify as many people with the virus as pos…
1 in 10 children affected by bushfires is Indigenous. We've been ignoring them for too long
The catastrophic bushfire season is officially over, but governments, agencies and communi…