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Update on Beaumont Hospital Respiratory Clinic April 3rd

  Dear All We have received confirmation from Beaumont Hospital that all outpatient appointments that had been scheduled for 3 April with the Respiratory Clinic have now been cancelled. Professor Costello will be going through his patients and making contact with them all in due course.   Keep safe and well, From the MDI Team […]

Update from the Neurology Clinical Programme: Access to Neurology Services and Covid19

We wish to share with you Guidance issued today from the Neurology Clinical Programme: Access to Neurology Services and Covid19 Neurology services will continue to operate with some changes. Patient safety is being prioritised to limit the risk of COVID infections. For this reason, most  face to face out patient clinics have been cancelled. However, phone […]

MDI Update on Beaumont Hospital Neurology Clinics for April

  Dear All We wish to inform you that MDI has received notification from Beaumont Neurology Clinic that they plan to run virtual clinics in April for people with neuromuscular conditions. They advise that no patients should attend the hospital in person. We are also in regular contact with Beaumont Respiratory Clinic and will keep […]

MDI Update on Support and Advocacy

  Dear All We hope you and your loved ones are all keeping safe and well. We want to let you know that MDI is working hard behind the scenes to advocate on behalf of our members throughout this crisis. MDI is a member of the Disability Federation of Ireland and we are letting them […]

Care Alliance Ireland Family Carer Support Group

In light of the curtailment of many face-to-face Family Carer support services, and following extensive feedback, Care Alliance Ireland has set up an online Family Carer Support Group. As of yesterday, the group is now up and running: https://www.facebook.com/groups/FamilyCarerOnlineSupportGroupIreland/ This will be delivered through the Facebook platform, in a closed/private group format. Users will need […]

Remembering Three Outstanding Women on International Women’s Day – Sunday March 8

  Join us this International Women’s Day, Sunday March 8, in taking a moment to remember and salute three of the outstanding women who contributed hugely to the development of Muscular Dystrophy Ireland (MDI) – Florence Dougall, Judy Windle and Ursula Hagerty. We are truly grateful to them for their vision and tireless commitment which […]

Muscular Dystrophy Ireland Notice of Extraordinary General Meeting (“EGM”)

Please see below Notice of Extraordinary General Meeting (EGM) for Muscular Dystrophy Ireland   Muscular Dystrophy Ireland Notice of Extraordinary General Meeting (“EGM”)   20/02/2020 Dear Members, I wish to inform you that Muscular Dystrophy Society of Ireland Company Limited by Guarantee will hold an Extraordinary General Meeting (“EGM”) on Sunday, 8th of March 2020 […]

New Year’s Message from MDI CEO

New Year’s Message from MDI CEO Elaine McDonnell   Dear All 2019 proved to be a busy, exciting and challenging one for Muscular Dystrophy Ireland with many achievements. We have had some changes in staff throughout the year and would like to express thanks to staff who have moved from the organisation and welcome the […]

MDI Joint Funding Scheme HRCI & the HRB

MDI Joint Funding Scheme with Health Research Charities Ireland and the Health Research Board MDI is excited to have recently announced a call for research proposals under the Health Research Charities Ireland and the Health Research Board Joint Funding Scheme. We have encouraged proposals for all types of research, including basic, clinical, psychosocial and health […]

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