Search fresh public links, source activity, and ready-to-use post angles for Friedreich's Ataxia.
Fresh curated links around Friedreich's Ataxia are collected here so marketers can spot useful updates and turn timely ideas into posts faster.
Recent items include:
Recent curated links from global sources. Generate one free draft from any story, then use SocialBu to schedule and refine your content calendar.
Friedreich’s ataxia is a rare, progressive, neuromuscular condition affecting about 200 people in Ireland
Patients with Friedreich's Ataxia have called for change after their campaign for the reimbursement of the drug Skyclarys.
Niamh Ní Hoireabhaird has Friedreich’s ataxia, and has spent years researching the rare disease and campaigning to have the Skyclarys drug reimbursed
The HSE has approved the reimbursement of the drug Skyclarys for people with Friedreich's Ataxia.
The HSE was against funding the potentially life-changing treatment, which costs €288,000 per patient per year.
Omaveloxolone, branded as Skyclarys, has been approved in US and Europe for treatment of disease
Sinn Féin Leader Mary Lou McDonald has called on the Government to ensure families affected by Friedreich's Ataxia can access drugs to treat it.
The HSE Drugs Group made the recommendation following a meeting to consider an application for the reimbursement of Skyclarys.
Fianna Fáil’s John McGuinness, whose nephew has Friedreich’s Ataxia, says he is ‘shocked’ by a HSE recommendation not to fund treatment.
Swinburne researchers have discovered how broccoli could help treat an extremely rare and incurable disease that affects only about 200 Australians. A naturally occurring compound...
www.ataxia.org.uk Twitter: @AtaxiaUK Primary research areas Neurological Additional research areas Cardiovascular, Ear, Inflammatory and immune system, Mental health Grant...
The HSE said it ‘took account of a substantially improved financial offer made in recent days by the company Biogen’.
There would have to be "significant price reduction" in the cost of a drug to treat Friedreich's Ataxia for it to be covered by the HSE, according to the National Centre for Pharma...
As patients with Friedreich’s ataxia wait for a decision on Skyclarys, Ireland must rethink how we assess costly medicines.
Emily Felix’s lawyers submit that delaying her access to the drug could cause further deterioration
http://www.atsociety.org.uk/ Twitter: @ATSociety Primary research areas Cancer, Inflammatory and immune system, Metabolic and endocrine, Neurological, Respiratory Grant typ...
A new study explains why spinocerebellar ataxia type 1 (SCA1) damages specific brain regions despite widespread expression of the mutant ATAXIN-1 (ATXN1) protein.
Use SocialBu to discover ideas, generate post drafts, and schedule them across your social channels.