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#rare diseases
# 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
View more polls
Poll: What Government coalition do you want?
WITH TALKS BETWEEN Fianna Fáil and Fine Gael set to take place next week, the prospect of a Grand Coalition is looking like a distinct possibility.
According to a Business Post/Red C opinion poll today, fewer than two in ten people want another General Election.
Some 26% of the 3,700 voters surveyed favour a grand coalition involving Fianna Fáil and Fine Gael and smaller parties.
Another 26% favour a Sinn Féin-led left-wing government, while 19% of voters say they would prefer a coalition involving Fianna Fáil, Sinn Féin and smaller parties.
So, today we’re asking: What Government coalition do you want?
Poll Results:
Fianna Fáil-Fine Gael grand coalition with smaller parties (6351)
Sinn Féin-led coalition with smaller parties (3740)
Another General Election (3091)
Sinn Féin-Fianna Fáil coalition with smaller parties (2822)
None of the above (969)
Share your story: voices@thejournal.ie
How I Spend my Money: A 26-year-old chef in Maynooth who is studying while working
By TheJournal.ie reader
Opinion: Why has the State invested €70m in a private company to look at our genetic data?
By Dr Ciara Staunton - @ciaralstaunton
The Irish For: Why do so many Irish politicians start out as teachers?
By Darach Ó Séaghdha - @TheIrishFor
Darach Ó Séaghdha asks why we elect so many múinteoirí to the Oireachtas.
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