Results for "Friedreich’s ataxia"

The HSE has agreed to fund a specialized medication for a 30-year-old woman with Friedreich’s ataxia, marking a significant victory for rare disease advocacy in Ireland.

Advocates and politicians are pressing the government and the HSE to reimburse the cost of Skyclarys, a life-changing drug for Friedreich’s ataxia, as patients suffering from the rare disease plead for access to the medicine.

A gathering in Cork showed strong support for individuals diagnosed with Friedreich’s ataxia, a rare genetic disease.

The HSE Drugs Group has recommended against covering the cost of a drug for Friedreich’s ataxia, citing challenges in balancing the drug's effectiveness against its high cost.

A Cork father, who previously lost a son to Friedreich’s ataxia, expressed devastation after the HSE deferred a decision on a life-saving drug for his other son, raising fears about the impact.

Patients suffering from Friedreich’s Ataxia are urging the HSE to fund a potentially life-changing treatment that costs €288,000 per patient annually, which the HSE has resisted funding.

Campaigners for Friedreich’s ataxia are planning a protest in Dublin, asserting that 'Our lives are worth more than money' in their fight for better support and treatment.

Patients suffering from Friedreich’s Ataxia have encountered a significant setback after the HSE Drugs Group rejected reimbursement for the drug Skyclarys. The recommendation will now proceed to a meeting of HSE senior management on August 25 for a final decision, offering a glimmer of hope.

A woman from Galway living with the rare degenerative disease Friedreich’s Ataxia is calling on the government to make a potentially life-changing treatment available in Ireland.

A new drug for Friedreich’s ataxia is recommended against funding by the NCPE due to its high cost versus benefits, sparking debate on its availability.

Niamh Ní Hoireabhaird, a campaigner for Friedreich’s ataxia, discusses the personal cost and draining nature of advocacy despite increased awareness for the rare disease.

Fianna Fáil TDs, senators, and MEPs are in revolt over the HSE's refusal to reimburse a life-saving drug for Friedreich’s ataxia patients, criticizing the system as broken and unfit for purpose.

A 28-year-old woman from Co Kilkenny, diagnosed with the rare neuromuscular disease Friedreich’s ataxia at age 12, is suing the Health Service Executive (HSE) over alleged delays in determining her application for access to a crucial drug, citing 'irreversible consequences'.