Mother fears delay in rare disease plan

A MOTHER who spent years campaigning for families affected by an uncommon genetic disease is fearful that a two-year deadline for the launch of a national strategy to treat patients with rare diseases will not be met.

Anne Lawlor’s daughter, Áine, 28, was born with a genetic deletion syndrome called 22q11 deletion syndrome but was only diagnosed with the condition when she was 15.

The diagnosis explained many of the difficulties Áine had been experiencing.