25 Jun 2019

Father of son with rare genetic disease forced to move to Holland for treatment

Health and Social Care Editor

The father of a child with a rare genetic disease is having to move to the Netherlands to receive treatment that the NHS won’t fund.

We spoke to him four months ago when Max was first diagnosed.

He and other families had hoped an intervention by the Health Secretary would lead to the drug being approved, but nothing has happened.

Families are now seeking a judicial review over the decision.