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Avril Kennan 🌍 20h
are challenging, lonely, worrying and sometimes heart-breaking. Today however, in advance of , we make progress, honour stories and plan for a better future with , & .
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RAIRDA 21h
This Saturday is . Around 9,000 people each year will be diagnosed with a rare autoimmune rheumatic disease (RAIRD). Find out more about these conditions 👇
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Sarah-Jane Murphy 19h
Dad👨🏻‍✈️died of Multiple System Atrophy at 53. He was forced to retire from Aer Lingus aged 42. Nerve cells in brain deplete & affect speech, gait, swallow & vision. Even though he was a WARRIOR who never let a day pass without laughing, it was a bitch of a thing.
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Rare Disease Day Feb 19
Did you know? 300 million people worldwide are living with a rare disease. Download, edit and adapt the infographics from . Share them on social media to spread the word about Rare Disease Day on 29 February!
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P A P I 10m
RARE is not as rare as you think! Rare is.not scarce, rare is not infrequent, rare is not remote.
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IPPOSI 18h
Thank you to & Cllr Tom Brabazon for hosting & attending the launch of the Easy Guide to Rare Disease at The Mansion House today and to for his attendance & support
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P A P I 9m
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EU_Health Feb 18
Any disease affecting fewer than 5 people in 10,000 in the EU is considered rare. Although this might appear small, it translates into approximately 246,000 people. We're getting ready for on 29 February, are you? More:
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CF Ireland 20h
CFI are delighted to attend the launch of the Rare Disease Guide at the Mansion House today ahead of on February 29th.
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Novartis Ireland 20h
Philip Watt “we are living in an era of revolution in terms of genetic therapies.” “72% rare diseases are genetic”. “We must also remember travelers & migrants who have particular types of rare diseases”
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Epilepsy Foundation Feb 22
300 million people worldwide live w/a rare disease. Several epilepsy types are rare, have hard to control seizures, & can be devastating for families. Join us this (Feb 29) in raising awareness about rare epilepsies. Rare Epilepsy Network:
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ERN ReCONNET Feb 22
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Huntingtons.ie 20h
Delighted to have Chloe, Geraldine and Fiona at launch of EasyGuide with and
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TOFS 17h
It’s here! TOFS awareness week 24 Feb - 1 March. We’re just in time for on 29 February. Here’s how YOU can spread the word for
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Mary Kitlowski Feb 22
Share our daily facts throughout February to raise awareness.
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DEBRA Ireland 19h
We are proud to be members of the Rare Disease Taskforce. Today see's the launch of a new guide to Rare Disease with our very own telling her story. well done to everyone and all patients and orgs involved. 🦋
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IPPOSI Feb 23
We are proud members of the Rare Disease Taskforce & will be co hosting the launch of the Easy Guide to Rare Diseases in Ireland today! Looking forward to seeing all our members & supporters later.
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Huntingtons.ie 19h
Aine and Anne at speak about their experience of living with a
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Saurabh Kapse Feb 23
Rare diseases awareness marathon organized by in Nagpur.
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Dr Mark Guthridge Feb 23
Replying to @DiseasePrimers
with viruses including and HHV6 are thought to cause some cases syndrome Sjogren syndrome symptoms can be extremely variable making diagnosis a challenge. Specific tests for distinguishing Sjogren from below
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