Midlands TD Calls For Public Access To Rare Disease Treatment

Skyclarys is the first approved therapy demonstrated to slow disease progression.

A Midlands TD is calling for advances in treatment for a rare disease to be made publicly accessible.

In Ireland, about 200 people have Friedreich’s ataxia, a rare inherited disorder that progressively affects the spinal cord and nerves, causing worsening coordination and hearing problems.

Skyclarys is the first approved treatment shown to slow progression, with some doctors reporting up to a 50% reduction in its rate.

The drug was approved in Europe in February 2024, and is already reimbursed in Spain, France, and Italy.

Longford Westmeath TD Micheál Carrigy says he wants progress to be made as soon as possible:

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