Fighting Blindness, patient advocacy groups & reps brief politicians on the Get Rare Aware campaign

Fighting Blindness joined Rare Diseases Ireland on Wednesday, June 28, to brief politicians on the Get Rare Aware campaign. The campaign aims to highlight unacceptable delays in genetic testing in Ireland.

Ireland has only 1/2 the staff it needs for genetic services. 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.

Pictured is a group standing outside the Dail and holding placards for the Get Rare Aware Campaign. Declan Meenagh, wearing sunglasses, with other members of the Rare Diseases Ireland campaign group at Leinster House.
Declan Meenagh, wearing sunglasses, with other members of the Rare Diseases Ireland campaign group at Leinster House. Pic: Gareth Chaney/Collins.

Our Advocacy Officer, Declan Meenagh, spoke to Eilish O’Regan in the Irish Independent to explain the impact of these delays on his ability to get a diagnosis. Declan has waited over thirty years for a genetic test to confirm a rare eye disease that has left him with only 5% vision. He relies on the work of us here at Fighting Blindness to fund his genetic test.

Pictured are Aine Nolan, aged 2, Ivan Bacik, TD, Declan Meenagh, Fighting Blindness, Neil Ward Fighting Blindness. Rare Diseases Ireland (RDI) launched a new national campaign, Get Rare Aware to bring politicians, medical experts and people living with rare diseases together to take action on under-resourced genetic services at the Department of Clinical Genetics at Children’s Health Ireland (CHI).
The Get Rare Aware campaign is urging politicians to take action on Ireland’s under-resourced genetic services
Pictured are Aine Nolan, aged 2, Ivan Bacik, TD, Declan Meenagh, Fighting Blindness, Neil Ward Fighting Blindness. Pic: Shane O’Neill, Coalesce.

Read the full interview with Declan here: Irish Independent interview with Declan Meenagh.

These delays are unacceptable and need to be remedied. We need better access to genetic testing and improved timeliness of diagnosis for those living with a rare disease.

We proudly support the Rare Diseases Ireland #GetRareAware campaign, which is being led by Rare Diseases Ireland CEO, Vicky McGrath, and we stand with them in calling for early access to genetic testing to improve the health system for the 300,000 people living with a rare disease in Ireland and their families.

You can support the #GetRareAware campaign and learn more here: https://www.getrareaware.ie/.