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

Ireland's HSE Drugs Group is scheduled to meet to further consider whether to cover the cost of Skyclarys, a drug designed to slow the progression of Friedreich's Ataxia.

Patients in Ireland suffering from Friedreich's Ataxia, a rare and progressive life-limiting disease, have been subjected to appalling treatment, the Dáil (Irish parliament) was informed.

Taoiseach Micheál Martin has expressed his desire for patients in Ireland living with Friedreich's Ataxia to gain access to the first treatment for the condition as quickly as possible.

A Polish article highlights the challenges in identifying Friedreich's ataxia, a rare disease, in Poland, noting that many individuals with the condition likely remain undiagnosed.

As patients with Friedreich's ataxia await a decision on Skyclarys, there is a call for Ireland to rethink and increase transparency in its process for assessing costly medicines.

The National Centre for Pharmacoeconomics (NCPE) has stated that the cost of a drug for Friedreich's Ataxia must be reduced for the HSE to consider purchasing it.

Sinn Féin Leader Mary Lou McDonald has urged the Government to ensure families affected by Friedreich's Ataxia can access necessary drugs to treat the condition.

Portugal's Infarmed has concluded evaluation processes for new medications, including one for the rare neurodegenerative condition Friedreich's ataxia and another for specific types of brain cancer.

The third Saturday in May is traditionally observed to raise awareness about Friedreich's ataxia, a rare neurological disease affecting approximately 26,000 people in Europe, highlighting the significant challenges it presents.

Friedreich's ataxia, a rare disease, is difficult to identify in Poland, with many patients remaining undiagnosed, according to Professor Bartosz Karaszewski.

An Irish Fianna Fáil TD, whose nephew has Friedreich's Ataxia, expressed shock over a recommendation not to fund treatment for the condition, emphasizing the importance of how society treats the sick.

The HSE Drugs Group made the recommendation following a meeting to consider an application for the reimbursement of Skyclarys.

The Taoiseach has not provided a timeline for the approval of a drug to treat Friedreich's ataxia, following a HSE meeting to discuss recommendations on its pricing and reimbursement.

Portugal's national health service has authorized two new treatments: Skyclarys for Friedreich's ataxia and Voranigo for Grade 2 brain tumors in adults and adolescents.

Slovakia has finally approved a drug for Friedreich's ataxia after a two-year wait, a decision hailed as a miracle by patient organizations, during which some patients reportedly died.

Patients suffering from Friedreich's Ataxia (FRDA) are urging the government to make the first treatment for their disease accessible.