Dear supporter,
We’re delighted to share some more incredible and positive news for the mito community – today sees the announcement of the first ever mitochondrial disease treatment approved for use on the NHS in England!
The National Institute for Health and Care Excellence (NICE) has today announced the approval of a drug called idebenone for the treatment of Leber’s hereditary optic neuropathy (LHON). The drug’s been available for limited use by patients in Scotland and Wales for a number of years, but until now wasn’t licenced in England.
We’re proud to have been a key stakeholder throughout the NICE submission process, working alongside our friends at the LHON Society who campaigned tirelessly to make this happen.
Following the recent positive news about the early successes of mitochondrial donation, this is another milestone. The first ever approved therapy for a mitochondrial disease available across the whole of Great Britain, and proof that progress is possible, it shows how collaboration, persistence and patient power can drive real-world change.
