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.

Patient Advocacy Service

The Patient Advocacy Service (PAS) provides free, independent and confidential information and advocacy support to people in Ireland who wish to make a formal complaint about their care in a Health Service Executive (HSE) funded public acute hospital, and in the aftermath of Patient Safety Incidents. People looking for support can contact the PAS confidential […]

Keeping Well This Winter

Our Health Service this Winter Look out for your Keeping well this Winter booklet in the post. It is being delivered to every household in Ireland over the coming weeks. This booklet contains essential health information and advice to help you plan for the winter months ahead, as we live with the impact of COVID-19 (coronavirus) on […]

Disability Legal Information Clinic – now online!

The Disability Legal Information Clinic, run by the Centre for Disability Law and Policy in NUI Galway, will be completely online for the 2020/2021 academic year. The clinic provides free, accessible, confidential legal information on disability related legal issues and will now be available right across Ireland for disabled people, their families and supporters. The […]

Update on MDI Annual General Meeting 2020

Dear All In response to the current Government Guidelines in relation to ongoing Covid 19 emergency and the restrictions in place, the decision has been made to postpone the MDI Annual General Meeting (AGM) 2020 until further notice. The AGM was scheduled to take place on Saturday 16th May at the MDI Head Office in […]

MDI Update on Respiratory Clinic in Beaumont Hospital

Dear All We have received confirmation today from the Respiratory Clinic in Beaumont Hospital that appointments are 100% cancelled and that they will be rescheduled in due course. We understand that some members recently received text messages confirming their appointment for Friday – we have been advised to ask you to please disregard these. If you had […]

Helping Children and Teenagers to Understand

Here is some guidance from HSE Psychological Services on the coronavirus and helping children and teenagers to understand.   Children and teenagers will often take a lead from us in terms of how we respond to events, so it is important that we are not overly worried or anxious in their presence. Every child is […]

MDI Update on Adult Neurology Clinic in Beaumont Hospital

Dear All We have received confirmation today from the Adult Neurology Clinic in Beaumont Hospital that appointments are 100% cancelled and that they will be rescheduled in due course. We understand that some members recently received text messages confirming their appointment for Friday (20th March) – we have been advised to ask you to please […]

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