Ireland has only 1/2 the staff it needs for genetic services. People are waiting over 2 years for the right diagnosis. The delay in diagnosis means that people are being treated for the wrong diseases. As outlined in Sláintecare, all 6 Regional Health Areas will refer people suspected of living with a rare disease to the Department of Clinical Genetics at our Lady’s Hospital, Crumlin for genetic services.
Please take this opportunity to contact the Oireachtas members that represent people in your area and ask them to Get Rare Aware. Take Action Now.
Dublin Bay South, Carlow-Kilkenny, Tipperary (South), Waterford, Wexford, Wicklow
Fill in the form below for Area C or select a different area. Click submit and the email opposite will be sent on your behalf to all TDs and Senators representing people in your area.
Are you aware that people living with a rare disease wait over 2 years for a diagnosis after a referral for genetic testing and can be treated for the wrong condition while they wait? However, in comparable health systems the wait time is only 12 weeks. I need your help to improve the system for the 300,000 people living with a rare disease in Ireland and ensure that the commitment in the programme for government to support genetic services in Our Lady’s Children’s Hospital, Crumlin is delivered.
Genetic services in Ireland are drastically under-resourced. Your constituents rely on our only national genetic testing site, at the Department of Clinical Genetics of Our Lady’s Children’s Hospital Crumlin. This centre is the most under-resourced when compared to other health systems. Due to the lack of capacity and delays in receiving a diagnosis, people living with a rare disease are on multiple waiting lists and are typically initially treated for the wrong diseases.
As 72% of rare diseases are genetic in origin, giving people suspected of living with a rare disease and their families’ access to genetic testing will help them get the right diagnosis faster. Earlier access to genetic testing will also free up resources within the health system as people suspected of living with a rare disease should no longer have to meet 3 or more different consultants before getting an accurate diagnosis.
This issue is of vital importance to your constituents and directly impacts a quarter of all families who are supported by Regional Health Area C. I request that you support people living with a rare disease, their families and carers, by asking the Minister for Health to provide adequate resources for genetic services in Our Lady’s Children’s Hospital, Crumlin. A genetics service that seeks to realise its clinical potential, provide a quality experience for people living with a rare disease and pursue an efficient allocation of resources should set waiting lists as a key measure of performance. Other health systems have a turnaround time of 12 weeks; we can and should set the same ambition.
I’m asking you to Get Rare Aware and support our campaign to improve the health system for the 300,000 people living with a rare disease in Ireland and their families.
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List of TDs and Senators who will receive your mail
Mr Barry Ward, Dun Laoghaire, Senator
Mr Cormac Devlin, Dún Laoghaire, TD
Ms Jennifer Carroll MacNeill, Dún Laoghaire, Minister
Mr Richard Boyd Barrett, Dún Laoghaire, TD
Mr Ossian Smyth, Dún Laoghaire, Minister
Mr Gerry Horkan, Dún Laoghaire, Senator
Mr Victor Boyhan, Dún Laoghaire, Senator
Mr Chris Andrews, Dublin Bay South, TD
Ms Ivana Bacik, Dublin Bay South, TD
Mr Jim O’Callaghan, Dublin Bay South, TD
Mr Eamon Ryan, Dublin Bay South, Minister
Mr Michael McDowell, Dublin Bay South, Senator
Ms Jennifer Murnane O’Connor, Carlow-Kilkenny, TD
Mr John McGuinness, Carlow-Kilkenny, TD
Mr John Paul Phelan, Carlow-Kilkenny, TD
Ms Kathleen Funchion, Carlow-Kilkenny, TD
Mr Malcolm Noonan, Carlow-Kilkenny, Minister
Mr Alan Kelly, Tipperary, TD
Mr Jackie Cahill, Tipperary, TD
Mr Martin Browne, Tipperary, TD
Mr Mattie McGrath, Tipperary, TD
Mr Michael Lowry, Tipperary, TD
Mr Garret Ahearn, Tipperary, Senator
Mr David Cullinane, Waterford, TD
Mr Marc Ó Cathasaigh, Waterford, TD
Mr Matt Shanahan, Waterford, TD
Ms Mary Butler, Waterford, Minister
Mr John Cummins, Waterford, Senator
Mr Brendan Howlin, Wexford, TD
Mr Johnny Mythen, Wexford, TD
Mr Paul Kehoe, Wexford, TD
Ms Verona Murphy, Wexford, TD
Mr James Browne, Wexford, Minister
Mr Malcolm Byrne, Wexford, Senator
Ms Jennifer Whitmore, Wicklow, TD
Mr John Brady, Wicklow, TD
Mr Steven Matthews, Wicklow, TD
Mr Simon Harris, Wicklow, Minister
Mr Stephen Donnelly, Wicklow, Minister
Mr Pat Casey, Wicklow, Senator