Exploring loss

Exploring loss through death Thursday 10th March from 7pm to 9pm via Zoom The death of the someone close to you can be a very difficult time.  This session will help you to navigate this challenging time. For more details or to register for this event see poster or contact your local Family Support Worker, […]


Member’s course runs via Zoom every second Wednesday from 11am to 1pm, Parents / Carers course runs monthly via Zoom on Tuesdays For more details one either of the above courses click here or see poster below or contact your local Family Support Worker, call Ewa on 086 6043365 or email mdiproject@mdi.ie.

Daily living, and quality of life survey

Exploring illness, daily living, and quality of life Eoin Fenton, a fourth-year social care honours student studying in Munster Technological University (MTU) would like to invite you to complete a survey (link below). What is this survey about? This survey explores the illness experience, daily living, and quality of life of those living with Muscular Dystrophy. […]

Announcement – Dr John Roche (RIP)

It is with profound sadness and regret that, after a brief illness, we announce the sudden passing of our Board Member, former Chairperson, and dear colleague, Dr John Roche. MDI express our heartfelt sympathy to his children, Adrienn and Attarra, his mother Renate, sisters Graziella and Catherine, brother Peter, extended family, and all his PAs […]

MDI member to speak at Dublin launch of campaign for more neurology nurses

Muscular Dystrophy Ireland member, Emer O’Sullivan, will speak at the Neurological Alliance of Ireland’s (NAI) Dublin launch of the #patientsdeservebetter campaign for more neurology nurses. Register for the online launch which takes place 12pm on Tuesday 1st March here and join us in supporting the campaign.

Treatment for people at the highest risk from COVID-19

Treatment for people at the highest risk from COVID-19 A new medicine is available to treat people with COVID-19 (coronavirus) who are at the highest risk of becoming seriously ill. Sotrovimab is also known by the brand name Xevudy. It is the first type of COVID-19 medicine available in Ireland. You’ll be told by your doctor […]

COVID-19 booster (4th) dose

COVID-19 booster (4th) dose for people who are immunocompromised (have a weak immune system) People who have a weak immune system, also called immunocompromised, can now get a booster (4th) dose. People in this group were offered an additional dose of the COVID-19 vaccine last year, and can now get a booster dose if it […]

MDI marks #CareDay22

MDI is delighted to mark #CareDay22, a global celebration (and the world’s largest celebration) of the rights of children and young people with experience of care. It takes place on Friday 18 February and is the 7th annual Care Day! This year’s theme, “It takes a village”, focuses on how different people in communities can […]

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