One-third of children with rare diseases have to wait over five years for diagnosis – Rare Disease Ireland

More than one-in-three children with a rare disease waited over five years for their diagnosis, new findings have revealed.

It has also emerged that some 4,023 children are now on waiting lists for clinical genetics.

These findings, published today (MON) by Rare Disease Ireland, point to a “fragmented” and “torturous” route to treatment for thousands of families.