Anger over lack of progress six months after rare disease strategy launched

Rare Diseases Ireland chief executive Vicky McGrath said she was 'deeply concerned' by the survey findings. Picture: Moya Nolan

“We are effectively on our own.” That is how one parent summed up supports for children with rare diseases as families mark six months since the launch of a new national strategy.

Families and advocates are now calling for faster and more practical progress on the commitments made in that plan.