Fianna Fáil Letter Challenges HSE Stance on Rare Disease Drug

Pressure grows over HSE refusal to fund Friedreich's Ataxia treatment as government urged to act

Fianna Fáil’s John McGuinness, whose nephew has Friedreich’s Ataxia, says he is ‘shocked’ by a HSE recommendation not to fund treatment.

Sinn Féin leader urges Taoiseach to intervene after HSE refusal to fund drug for rare disease

Move follows Fianna Fáil politicians’ call for HSE to change stance on Friedreich’s ataxia treatment

Fianna Fáil letter challenges HSE stance on rare disease drug

The vast majority of members of the Fianna Fáil parliamentary party have signed a letter raising "serious concerns" about a HSE group recommendation to refuse funding for Skyclarys, a drug used to treat the degenerative disease, Friedreich's Ataxia.

TD uncle of Friedreich's Ataxia patient 'shocked' by HSE refusal

John McGuinness's nephew has Friedreich's Ataxia and has witnessed him go from being an active young man to using a wheelchair to get around.

Senior Fianna Fáil members push Government to overrule HSE on drug funding

It follows outcry from those suffering with the neurological disorder Friedreich's ataxia, who had been calling for the Skyclarys drug

Fianna Fáil revolt over HSE refusal to reimburse life-saving drug for Friedreich’s ataxia patients

TDs, senators and MEPs say system ‘broken and not fit for purpose’