Welcome to the MDI website. Content and updating of information is ongoing on our website, therefore if you cannot find what you are looking for please contact us.

What we do

Muscular Dystrophy Ireland (MDI) is a support organisation for individuals with muscular dystrophy and their families. The MDI National Resource Centre for Neuromuscular Conditions is located in Chapelizod Dublin and contains the Home from Home Apartment.

RTE features ground-breaking gene therapy for SMA Type 1 in ‘Hospital Live’

You can hear about the wonderful impact of gene therapy, Zolgensma, for babies with Spinal Muscular Atrophy (SMA) Type 1 which has recently been used for the first time in Ireland – on RTE’s Hospital Live here.  (It starts 8.47 minutes in.) The programme features parents, David Ryan and Liz McMahon, as well as Dr Declan […]

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86 per cent of parents want to know if their newborn has a rare condition, even if it’s not yet treatable

Rare Diseases Ireland has published a new research study which reveals that 86 per cent of Irish par

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Parent Project Muscular Dystrophy (PPMD) Conference 23-26 June 2022

Parent Project Muscular Dystrophy’s (PPMD) 2022 Annual Conference takes place from 23-26 June

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INVITATION FOR EXPRESSIONS OF INTEREST IN MDI ADULT HOLIDAY AND BREAK PROGRAMME 2022

As the public health restrictions have now thankfully been lifted, we are delighted to offer adult m

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ANNUAL REPORTS AND AUDITED ACCOUNTS

See our reports here

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Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

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