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#rare diseases
# rare-diseases - Saturday 29 February, 2020
'You could have a ticking time bomb in your body': 9 in 10 people who have this serious genetic disorder don't realise
About 1,000 people in Ireland have HHT but many more are undiagnosed.
# rare-diseases - Tuesday 25 February, 2020
Broadcaster Keelin Shanley honoured during rare diseases event at Dublin's Mansion House
Keelin’s husband Conor was in attendance while Health Minister Simon Harris also paid tribute.
# rare-diseases - Monday 24 February, 2020
'I thought I was crazy': Patients with rare diseases urge next government to deliver on supports
Around 6% of the population in Ireland is living with a rare disease such as PKU and cystic fibrosis.
# rare-diseases - Sunday 24 February, 2019
'When we tried to explain PKU to people in the past, they'd say we were mad, things are different now'
People with this rare genetic condition need to maintain strict low-protein diets.
# rare-diseases - Wednesday 15 November, 2017
'The system is not adequate': Government sets up new way to judge medicines for rare diseases
Many drugs for rare diseases have been ruled as not “cost-effective” under existing criteria.
# rare-diseases - Tuesday 16 May, 2017
It robs people of the basics of life': Irish families bring Huntington's campaign to Vatican
Irish people living with Huntington’s Disease will have an audience with Pope Francis tomorrow.
# rare-diseases - Sunday 9 April, 2017
'I feel like a ticking time bomb' - Dublin woman appeals for help getting her life back
Mags Forkan suffers from Ehlers-Danlos Syndrome.
# rare-diseases - Tuesday 28 February, 2017
'Nobody knows what it is': The rare genetic condition that means people must avoid protein
Despite being rare, Ireland has one of the highest rates of PKU in Europe.
# rare-diseases - Saturday 7 January, 2017
'If she gets another chest infection she probably won't make it, that’s the reality'
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.
# rare-diseases - Tuesday 1 March, 2016
Only 18 people in the world have this rare disease - an Irish 3-year-old is one
It is estimated that there are over 6,000 rare diseases in existence in Ireland impacting an estimated 300,000-plus children and adults.
# rare-diseases - Thursday 4 June, 2015
A new specialist centre hopes to pin down tough to diagnose rare diseases
The National Rare Diseases Office was opened today by the Health Minister.
# rare-diseases - Thursday 26 February, 2015
'I know the current system doesn't work, I've buried two children'
Both of Tony and Mary Heffernan’s children died at the age of 5.
# rare-diseases - Saturday 9 March, 2013
Jamie's joints dislocate every day but he has no access to treatment
The Rare Disease Taskforce has asked the HSE to clarify its position in relation to the Treatment Abroad Scheme that could help.
# rare-diseases - Saturday 28 July, 2012
New drug for cystic fibrosis approved by European regulators
Regulators in Ireland must now approve the drug ahead of negotiations between the drug’s manufacturer and the HSE regarding pricing.
# rare-diseases - Wednesday 20 June, 2012
People affected by rare diseases asked to have their say on new plan
The government is looking for consultations up until 13 July from anyone affected by rare diseases.
Your say
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Poll: Should the Dáil continue to meet in Leinster House during the Covid-19 crisis?
THE DÁIL IS due to meet for three hours this afternoon to hear statements on health and social protection.
It has raised concerns that the Dáil session is an unnecessary gathering during the Covid-19 crisis and some TDs including Labour’s Alan Kelly and Ged Nash are sending in written statements instead of attending the Dáil chamber in person.
But some parties, including Sinn Féin and People Before Profit, have insisted that Dáil meetings such as today’s must continue to ensure democratic oversight and accountability as the country navigates an unprecedented health crisis.
Other governments, including the British government, are putting measures in place to host virtual parliamentary meetings.
So today we’re asking you: Should the Dáil continue to meet in Leinster House during the Covid-19 crisis?
Poll Results:
No (4120)
Yes (3085)
I'm not sure (315)
Share your story: voices@thejournal.ie
A nurse returning to work at the frontline: 'Not all heroes wear capes, but they all need a face mask'
By Deirdre Mullins
Wellness Wednesday: IBS is no joke, but there are simple things you can do to help yourself
By Dr Deirdre G. O'Donovan
Opinion: Boris is England’s King Midas. All he touched turned to gold, but now must be disinfected
By Peter Flanagan - @peterflanagan
Peter Flanagan says Covid-19 has stripped Johnson of his dreams of a clean Brexit legacy.
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