News

86 per cent of parents want to know if their newborn has a rare condition, even if it’s not yet treatable

May 25th, 2022

Rare Diseases Ireland has published a new research study which reveals that 86 per cent of Irish parents want to know if their newborn has a rare condition, even if it is not yet treatable. 65 per cent of parents are in favour of screening newborns for as many rare conditions as possible. The study, which is based on a national poll of 1,000 respondents conducted by iReach Insights, has also found that 83 per cent of parents think that families with newborn babies with an increased risk of a rare condition should be able to ask for specific screening tests to be included on the screening panel to ensure early diagnosis. “Ireland was one of the first countries in the world to introduce a national newborn screening programme in 1966. We are now languishing amongst the lowest ranked countries in the EU. Italy screens for 45 conditions while we currently screen for only 8 conditions. Our failure to keep pace is costing Irish children their lives,” said Vicky McGrath, CEO of Rare Diseases Ireland. More information on the study here here.

ILMI online memorial to James Brosnan, Dr. John Roche and Hubert McCormack

April 5th, 2022

We wish to share an invitation from Independent Living Movement Ireland to disabled people.

As Long As We Remember, They Live With Us: Wednesday 6th April 7:30pm
A Memorial to James Brosnan, Dr. John Roche and Hubert McCormack

In a relatively short space of time, the Independent Living Movement has lost three members, mentors, comrades, and friends. Many of us have not had a chance to connect with each other to share out stories of them, to remember them and to collectively ensure that we keep their memories alight as part of the Movement.

Remembering the words of our friend the late Hubert McCormack “We must never forget the battles they fought; we must always ensure that what they fought for will remain intact and progress; We must never forget the sacrifices they made; We must never take for granted the services that we enjoy today; We must keep our fallen friends’ dreams and aspirations for the future alive and we must continue in their footsteps and remain focused to ensure that disabled people with in this country and elsewhere, can live a life equal to that of our non-disabled counterparts”.

On the evening of April 6th, we invite disabled people to an online gathering as we remember those we worked alongside, planned and campaigned with, laughed with, sang and socialised with over the decades. It will be a chance to remember them for those who knew them well and a time to learn about their lives for those who didn’t but want to connect to the history of the Irish Independent Living Movement.

This is a zoom event and registration is essential. To register, please email info@ilmi.ie.