🧠 HSE Project: Improving Care for People with a Neurological Condition
The HSE is working on a new plan (called an integrated approach) to help improve care for people with a neurological condition. A neurological condition is when the brain, spinal cord, or nerves aren’t working properly. Some examples include Parkinson’s disease, epilepsy, head trauma, multiple sclerosis, motor neurone disease, headache (and migraine). We want to hear from people who use these services—patient and service user partners — so we can help improve care together.
Medical Independent: New molecular technology required for SCID and SMA screening – HSE
The introduction of new molecular technology to the National Newborn Bloodspot Screening Laboratory (NNBSL) is required to implement screening for severe combined immunodeficiency (SCID) and spinal muscular atrophy (SMA), according to the HSE. The Executive indicated this was an additional requirement to the “substantial” body of work required to introduce any new condition to the programme.
National Service Plan 2025 – Disability Federation of Ireland summary highlighting disability-specific measures.
The HSE have published the National Service Plan 2025 that sets the course for healthcare developments in the coming year. In response, DFI has prepared a summary highlighting disability-specific measures in the Service Plan.
HSE Patient Feedback For National Genetics And Genomics Office
National Genetics & Genomics Office are aiming to better understand what people who are referred to genetic and genomic services, and their families, need to know to help them better navigate services. The knowledge gained will be used to work towards an improved patient experience of using genetic and genomic services. More information the advert attached. Expressions of interest close on 23rd February 2024.
Reimbursement Approval of Evrysdi® for the Treatment of Spinal Muscular Atrophy
On 1 September the HSE announced that Risdiplam (Evrysdi®) has been approved for reimbursement in Ireland. This makes Risdiplam the third SMA medicine available in Ireland, alongside Zolgensma and Spinraza.