Rare Disease Day
2026
Cavernoma Awareness Video
I HAVE CAVERNOMA
“I had a cavernoma removed from my cerebellum 6 years ago!”
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Charlotte is the Vice-Chairperson of Cavernoma Ireland.
“I have a cavernoma which I have not had operated on but did get a shunt inserted as a result of the cavernoma bleeding.”
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Séamus is the Secretary of
Cavernoma Ireland
We partnered with our fellow member organisations of the European Cavernoma Alliance for the joint "I Have Cavernoma" awareness campaign.
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Cavernoma Ireland is proud to be a member of the European Cavernoma Alliance, which includes 10 country organisations.
Awareness - 2026 Light Up For Rare
Cavan Courthouse
Cavan Courthouse was illuminated in support of Rare Disease Day, standing in solidarity with the rare disease community. Sandra represented Cavernoma Ireland and was joined by members of Rare Ireland and Cavan County Councillors for a photo to mark the occasion
Pictured at the Courthouse (L–R): Kyle Rooney, Darina Slowey & their daughter Cora Rooney, Evie Rose Carolan, Karyn Carolan, Jacob Carolan, Colm Fallon & Sophie Fallon. (Back from left) Cllr Stiofán Conaty; Eoin Doyle, Chief Executive, Cavan County Council; Cllr Trevor Smith, Cllr Áine Smith; Cllr Niamh Brady, Cathaoirleach Cllr John Paul Feeley; Cllr Patricia Walsh, Deborah Leahy, Community and Enterprise Section, Social Inclusion; Sandra Phair, Chairperson Cavernoma Ireland, and Graham Carolan. The children are all members of Rare Ireland. PHOTO By: Lorraine Teevan.
Cavan Courthouse illuminated in Rare Disease Day colours
Raspberry Bear was also at the Courthouse with Sandra for #LightUpForRare 2026
Leitrim County Council Áras an Chontae offices
Leitrim County Council – Áras an Chontae offices in Carrick-on-Shannon was illuminated in support of Rare Disease Day.
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Our member Michelle was there on the evening and kindly captured this photo to mark the occasion.
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