Rare Disease Day
2025
Lenister House
Cavernoma Ireland was at the Oireachtas 'All Party Group meeting on Rare Diseases' in Leinster House, Wednesday 26th February.
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Sandra Phair, Chair of Cavernoma Ireland, attended the meeting.
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The meeting was marking Rare Disease Day by reconvening the Oireachtas All Party Group on Rare Diseases for the first time with the new Dáil. Organised by Rare Diseases Ireland(RDI).
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The Meeting;
- Highlighted the challenges of living with a rare disease in Ireland.
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- Gave details of RDI's hope for the future with the imminent publication of a new National Rare Disease Strategy; and
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- Outlined the opportunities that exist for Ireland as RDI seeks to embed innovation into the heart of care for people living with rare diseases.
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The Oireachtas is the bicameral parliament of Ireland. Leinster House is the seat of the Oireachtas,
Awareness - 2025 Light Up For Rare
Cavan Courthouse
Cavan Courthouse, was lit up for Rare Disease Day.
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Sandra represented Cavernoma Ireland and was joined by members of Rare Ireland.
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Pictured are; Sandra Phair, Cadáin, David and Rian Tierney, Cllr T.P. O'Reilly Cathaoirleach Cavan County Council, Senator Pauline Tully, Graham and Jacob Carolan and Sophie Fallon, Evie-Rose Carolan, Karyn Christy, Colm Fallon.
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This is our 5th year in having the courthouse lit up #LightUpForRare
Séamus Carroll - Leinster House Dublin​
Awareness - 2024 Light Up For Rare
Séamus Carroll in Dublin​
The National Concert Hall
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The ‘Wolfe Tone’ Statue at St. Stephens Green.
Cavan Courthouse
Cavan Court House lit up for Rare Disease Day.
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In attendance; The Cathaoirleach of Cavan County Council, Cllr Philip Brady. Fianna Fáil TD Brendan Smith and Cavan County Cllr Trevor Smith.
Sandra Phair of Cavernoma Ireland, Amanda & Lorcán Connolly members of Rare Ireland, and Sabrina Walsh.
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#LightUpForRare