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.
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.
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/.