# rare diseases
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usher syndrome
'Should I wear a plaque saying I have a disability?': The reality of life with sight loss during a pandemic
24 May 2020
20.2k
12
hht
'You could have a ticking time bomb in your body': 9 in 10 people who have this serious genetic disorder don't realise
29 Feb 2020
70.7k
7
ambassador
Broadcaster Keelin Shanley honoured during rare diseases event at Dublin's Mansion House
25 Feb 2020
26.6k
3
Healthcare
'I thought I was crazy': Patients with rare diseases urge next government to deliver on supports
24 Feb 2020
15.4k
3
low protein diet
'When we tried to explain PKU to people in the past, they'd say we were mad, things are different now'
24 Feb 2019
34.1k
1
cost effective
'The system is not adequate': Government sets up new way to judge medicines for rare diseases
15 Nov 2017
9.6k
5
rare diseases
It robs people of the basics of life': Irish families bring Huntington's campaign to Vatican
16 May 2017
10.2k
14
appeal
'I feel like a ticking time bomb' - Dublin woman appeals for help getting her life back
9 Apr 2017
72.4k
3
pku
'Nobody knows what it is': The rare genetic condition that means people must avoid protein
28 Feb 2017
40.4k
7
SPINAL MUSCULAR ATROPHY
'If she gets another chest infection she probably won't make it, that’s the reality'
7 Jan 2017
32.0k
16
Saving dylan
Only 18 people in the world have this rare disease - an Irish 3-year-old is one
1 Mar 2016
31.9k
3
Health Service
A new specialist centre hopes to pin down tough to diagnose rare diseases
4 Jun 2015
8.9k
14
rare diseases
'I know the current system doesn't work, I've buried two children'
26 Feb 2015
23.4k
3