22Q11 Ireland

@22Q11_Ireland

Irish parent-led voluntary group raising awareness of 22q11.2 deletion syndrome Working toward integrated care for 22qDS. Tweets by AnneL

Ireland
22q11ireland.org
Vrijeme pridruživanja: srpanj 2013.
1.999 fotografija ili videozapisa Fotografije i videozapisi

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  1. Prikvačeni tweet
    23. stu 2017.

    2:05
    winner supports families with members diagnosed with 22q11.2 Deletion Syndrome.
    9 proslijeđenih tweetova 51 korisnik označava da mu se sviđa
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  2. prije 1 sat

    Odgovor korisniku/ci @paulcullenit
    Probelms all over healthcare. We have no funded postgraduate training in dentistry. The trainees have to pay huge fees and work part time to survive. A huge barrier to implementation of the new oral health policy
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  3. proslijedio/la je Tweet
    prije 5 sati

    📢 Undergraduate students, applications for the StAR Summer Research Internships are now open. Choose from 30 projects .

    , , i još njih 7
    1 reply 7 proslijeđenih tweetova 10 korisnika označava da im se sviđa
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  4. prije 1 sat

    Candidates - 300,000 people live with a in their lifetime in that's 6% of population - the largest health constituency should not be excluded from debate!
    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  5. prije 3 sata

    We all talk about necessity of early intervention - starts with decent childcare services and decent conditions.

    0:24
    Big, big turnout in Dublin for the protest.
    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  6. prije 5 sati

    And.....did you know that parents are still founding charities & foundations in order to advocate for their children's health, social & educational needs. Should this be so in 2020? Why are basic human rights issues as 'charity'?

    Did you know? That while health is debated - charities, community and voluntary organisations currently provides approximately one quarter of acute hospital services and approximately two thirds of services to people with disabilities.
    2 proslijeđena tweeta 5 korisnika označava da im se sviđa
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  7. prije 7 sati

    Healing can take many forms 🤗

    Some lunchtime learning with the Creative Arts Therapies team from across well done ,and thanks for sharing one of the MT songs 🎤🎶🎵🎸
    2 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
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  8. prije 7 sati

    Amazing things happen when people work together for the common good.

    Public health doctors providing leadership and expertise in face of threat from coronavirus, linking with primary care, hospitals, NAS and all agencies. Accurate updates daily on HSE and hpsc websites. The better we contain, the better we withstand. Ní neart go cur le chéile.
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  9. prije 17 sati

    Emotional and behavioural phenotypes in young people with neurodevelopmental CNVs -

    2 korisnika označavaju da im se sviđa
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  10. prije 18 sati

    and meanwhile back at the ranch...

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  11. prije 18 sati

    Individually rare collectively common

    This message, that it is common to have a rare disease (after all there are nearly 7,000 rare diseases) is seldom mentioned before, during or after elections. Instead patient advocates battle alone or in small groups for both recognition and services. We really could do better.
    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  12. prije 19 sati

    Fg had a choice to prioritise slaintecare and place the office at the Taoiseach’s office as suggested in the plan. This would have given the plan strategic priority. They decided to place it in the dept of health.
    Poništi
  13. prije 21 sat

    Highlights the need for consistency of research into 22q, otherwise of little benefit to families and/or care pathways. "There is a need for testing a range of cognitive domains in a large sample where all participants have completed the same battery"

    1 proslijeđeni tweet 4 korisnika označavaju da im se sviđa
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  14. proslijedio/la je Tweet
    prije 22 sata

    "I feel for the devoted researchers who began their careers expecting to revel in the joy of discovery, only to find their love of the subject squeezed out, replaced by fear and anxiety."

    1 reply 37 proslijeđenih tweetova 70 korisnika označava da im se sviđa
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  15. prije 21 sat

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  16. prije 21 sat

    Odgovor korisniku/ci @HSE_DA
    Great to see now has plenty of datasets on data portal
    Poništi
  17. prije 21 sat

    Vote - "set enough time aside to be really influential on the future of your country"

    Poništi
  18. prije 22 sata

    Taken collectively 300,000 people in Ireland, 6% of pop, approx 7,500 in every constituency. Many are children & desperate parents often given info from UK👇 Genetic service shambolic.

    2 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
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  19. prije 22 sata

    Individually rare, collectively common. Rare diseases are a significant cause of physical, intellectual and sensory disabilities. 6% of the Irish population (inc very many children)

    Candidates - 300,000 people live with a in their lifetime in that's 6% of population - the largest health constituency should not be excluded from debate!
    1 reply 2 proslijeđena tweeta 1 korisnik označava da mu se sviđa
    Prikaži ovu nit
    Prikaži ovu nit
    Poništi
  20. prije 22 sata

    "A system that works for patients is a system that works for doctor"

    In her new column writes that the upcoming general election will be crucial in determining the future of healthcare in this country and urges people to vote
    2 korisnika označavaju da im se sviđa
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  21. prije 22 sata

    "I cannot speak for GPs, but consultants are sidelined and scapegoated, held responsible for system failures but excluded from shaping policy."

    In her new column writes that the upcoming general election will be crucial in determining the future of healthcare in this country and urges people to vote
    2 korisnika označavaju da im se sviđa
    Poništi

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