Have you heard of Friedreich’s Ataxia?
Until a constituent contacted me about his daughter’s diagnosis, I knew very little about this rare neurological condition.
Friedreich’s Ataxia is progressive and life-limiting, affecting coordination, balance and mobility. Around 1,100 people in the UK live with it, with symptoms often beginning during adolescence.
I recently attended Ataxia UK's drop-in in Parliament to learn more about the condition and the treatments available. There is now a medicine that can slow its progression, but despite being approved for use in the UK, people in England still cannot receive it through the NHS.
I’ll be raising this with Health Ministers and asking what can be done to help patients access the treatment whilst a longer-term decision is made.
