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 […]

#HoldFirm Campaign

HoldFirm Campaign HoldFirm is part of the ongoing COVID-19 public health advice programme from the HSE and the Department of Health. The HoldFirm campaign first aired in May 2020, as the end of the first phase of restrictions came into sight. Our President’s words, from the poem ‘Take Care’ written in 1993, is the inspiration […]

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 […]

Muscular Dystrophy Ireland Survey on Adult Camp and Holiday Programme

We would appreciate it if you would take a few minutes to complete our survey on MDI’s Adult Camp and Holiday Programme (accessible and supported breaks in Ireland organised by MDI for Adult Members with Muscular Dystrophy). We will use the information you give us to help us plan and develop programmes in these areas […]

Changing Places Ireland

Changing Places Ireland have created a petition to Make Changing Places Toilet Facilities mandatory in Public Buildings.  Please take a moment to add your name and share the petition via email and social media. Changing Places Toilet Facilities are different from standard accessible toilets. They provide extra equipment like a hoist and an adult sized changing bench. In Ireland there are only 15 Changing Places […]

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 […]

Apply now for Duchenne Patient Academy 2020

Apply now for Duchenne Patient Academy 2020 The Duchenne Patient Academy (World Duchenne Organization) will host a virtual training programme for patient advocates between 30 November and 6 December 2020. The majority of patient groups are members of the World Duchenne Organization and the Duchenne Patient Academy. Please note that individual patient advocates can also apply to […]

Action Duchenne Virtual Event

Action Duchenne held a virtual event recently for newly diagnosed families: Duchenne 101, an overview of the Standards of Care for Duchenne, Duchenne research, practical tips and benefits, and a Q and A session with the Action Duchenne team. You can watch it by following this link https://www.actionduchenne.org/newly-diagnosed-event-watch-recordings/.

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