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. Developed by Roche Pharmaceutical, Risdiplam is the only non-invasive SMA therapy, administered daily at home in liquid form by mouth or by feeding tube, making […]

New MDI video released: ‘The care pathway for children diagnosed with Duchenne muscular dystrophy’

We are delighted to share our new information video with you, ‘The care pathway for children diagnosed with Duchenne muscular dystrophy’. Our sincere thanks to the following people for taking part in the video: Sinéad Brennan, Clinical Nurse Specialist, Paediatric Neuromuscular Service, Central Remedial Clinic, Clontarf and at Children’s Health Ireland, Tallaght, and Sinéad O’Brien, […]

Public Consultation on the Wage Subsidy Scheme

  The government wants to make sure that people with disabilities who want and are able to work are supported and enabled to do so. To do this, the government wants to get your views on how to improve the Wage Subsidy Scheme. Please send your views by 5pm Friday 21 July 2023 via this […]

Webinar on spinal muscular atrophy (paediatrics) – MDUK – on 8 Dec

Join Muscular Dystrophy UK for their Muscles Matter 2022 seminar on spinal muscular atrophy (paediatrics) on Thursday 8 December 10am – 12pm. It will cover the latest research into as well as information and advice on living well. Speakers will include Professor Laurent Servais MD, PhD who is Professor of Paediatric Neuromuscular Disease at the […]

Webinar on Duchenne MD (adults) with MDUK on 5 Dec

Join Muscular Dystrophy UK for their upcoming Muscles Matter 2022 online seminar on Duchenne muscular dystrophy (adults) which will take place on Monday 5 December 2022 from 10am to 12pm. Speakers will include Professor Ros Quinlivan, Professor of Neuromuscular Disease, from UCL Queen Square Institute of Neurology. The session will cover the Adult North Star Network, and […]

Register with Electric Ireland as a Priority or Special Service customer

Electric Ireland is committed to providing support to customers who have special requirements where continuity of energy supply is critically important. Electric Ireland customers can register as either a Priority Service customer or a Special Service customer. Priority Service customer Priority Service customers are customers who are dependent on medical equipment including but not limited […]

Safety notice – Medtronic MiniMed 600 and 700 series insulin pumps

The Health Products Regulatory Authority (HRPA) has published a Safety Notice to raise awareness of a potential issue affecting the battery cap of all Medtronic MiniMed 600 and 700 series insulin pumps. The metal contact points of the battery cap may become loose or fall off, resulting in an incomplete battery connection and no power […]

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified