Parents' fears over muscular dystrophy treatment cost
3 September 2013 Last updated at 10:13 BST
Parents of children with life-shortening conditions fear that new treatments will not be available because of the cost, it is claimed.
The Muscular Dystrophy Campaign says neither the NHS in Wales nor England has a dedicated pot of money to pay for new drugs for rare diseases.
Later, the findings of a parliamentary inquiry will be published at Westminster into the future provision of high-cost medicines for rare diseases.
Bethan Jenkins is the assembly's chair of the cross-party group on muscular dystrophy.
She spoke to BBC Radio Wales presenter Gareth Lewis.