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Ombudsman says personal transport supports for people with disabilities are inadequate

Ombudsman Peter Tyndall has said that personal transport supports for people with disabilities are inadequate, unfair and inequitable. In his report, ‘Grounded: Unequal access for people with disabilities to personal transport schemes’, published today, the Ombudsman says that both he and his predecessors received many complaints about three schemes – the Motorised Transport Grant, the […]

Important step towards adoption of #UNResolution4Rare

We are delighted to share the news that the resolution, ‘Addressing the challenges of persons living with a rare disease and their families’, was unanimously adopted by the Third Committee of the United Nations on 15 November. This is an important milestone and step towards adoption of #UNResolution4Rare at the General Assembly in December. Ireland […]

‘Accepting and Connecting with Muscular Dystrophy’ – new book by MDI member

Our warm congratulations to MDI member, Siobhán Dunleavy, on the publication of her book, ‘Accepting and Connecting with Muscular Dystrophy’. We are really looking forward to reading it! Siobhán, aged 29 years old, was diagnosed with muscular dystrophy at 21. In her book, she tells her personal story of how being diagnosed with a life-changing […]

MDI Pre-Budget 2022 Submission

MDI has made a Pre-Budget 2022 Submission to government with recommendations based on issues raised by MDI members, as well as by the umbrella organisations we belong to. You can read the submission by clicking on this link MDI pre budget 2022 submission 3 August 2021

Powerchair football

Would you like to get involved in powerchair football in the South-East? Wexford-based MDI member, Conor Doyle, is interested in starting a powerchair football team in the South-East. If you are interested, he’d be delighted to hear from you. All genders and ages (12 years and upwards) are welcome! Training would take place in either […]

Orphan Drugs Bill

Legislation to streamline the HSE decision-making process on orphan drugs We are pleased to see that legislation is being brought forward to the Dáil that will seek to streamline the HSE decision-making process on orphan drugs. Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of life-threatening or very serious conditions that are […]

NTA Survey of Taxi’s and Hackneys

The National Transport Authority (NTA) is committed to the provision of high quality, accessible, sustainable transport connecting people across Ireland. In furtherance of this aim NTA has engaged Behaviour & Attitudes, an independent market research company based in Dublin, to conduct this survey with the aim of getting information on the demand, delivery and accessibility levels of […]

Looking Beyond COVID-19: The Future of Neurological Care

Description The pandemic has led to reflection and debate across healthcare in Ireland as to how services can recover from disruption and potentially overcome some of the systemic issues that impacted our health system pre COVID-19. Neurological care services are embracing new treatment approaches and technologies including those developed here in Ireland. On the other […]

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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core 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 Myositides

  • 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

  • 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

12. Other (Please Specify)

13. Unspecified