My News
Personalise your news feed by choosing your favourite topics of interest
#rare diseases
# rare-diseases - Sunday 24 May, 2020
'Should I wear a plaque saying I have a disability?': The reality of life with sight loss during a pandemic
Golf champion Carol Brill said daily tasks can be “very, very stressful” for people with sight and hearing loss.
# 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
View more polls
Poll: Have you been on or are you planning a staycation this year?
WITH INTERNATIONAL TRAVEL essentially off the cards for the rest of the year, it seems a lot of people have bought into the concept of a staycation at home here in Ireland.
Social media platforms are flooded with #staycation posts in what will hopefully boost businesses in domestic tourism following a devastating period for the sector.
But with a spike in new cases in recent days, a regional lockdown in the Midlands, and new measures this week including the mandatory wearing of face masks in all shops and commercial premises, fears are mounting that we could be entering a second wave.
So today we’re asking: Have you been on or are you planning a staycation this year?
Poll Results:
Yes, I've already been on a staycation (4394)
No, I haven't been and have no plans for a staycation (3332)
Yes, I have a staycation planned in the coming months (2592)
No, I have not been on a staycation (978)
Yes, but I am going to cancel my planned staycation (254)
Share your story: voices@thejournal.ie
Opinion: 'An unjustified panic against all international travel has developed in Ireland'
By Robert Dagg
Money Diaries: A construction contracts manager on €67K with a young family in Galway
By TheJournal.ie reader
Dublin Weather
Change location-
Tuesday
Mostly cloudy
Max: 19 °C
Min: 12 °C
-
Wednesday
Pleasant with periods of sun
Max: 21 °C
Min: 13 °C
-
Thursday
Periods of sun with a couple of showers
Max: 20 °C
Min: 15 °C
Mostly cloudy
Max: 19 °C
Min: 12 °C
Pleasant with periods of sun
Max: 21 °C
Min: 13 °C
Periods of sun with a couple of showers
Max: 20 °C
Min: 15 °C
Most Popular
Most viewed articles in the past 24 hours
Most Commented
Most commented articles in the past 3 days
Download our app
