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Safety notice – Medtronic MiniMed 600 and 700 series insulin pumps

The Health Products Regulatory Authority (HRPA) has published a Safety Notice to raise awareness of a potential issue affecting the battery cap of all Medtronic MiniMed 600 and 700 series insulin pumps. The metal contact points of the battery cap may become loose or fall off, resulting in an incomplete battery connection and no power […]

Have your say on the regulation of Home Support/Personal Assistance Services!

The closing submission date for the Department of Health’s Public Consultation on Draft Regulations for Providers of Home Support Services has been extended to 5pm on Thursday 4 August 2022. You can complete the survey here and also find a copy of the regulations in accessible formats. If you’d like further information, email HSRConsultation@health.gov.ie.

Appelgreen partners with FuelService to make fuel stations more accessible

Filling up the car is one of the biggest challenges that disabled drivers experience. Did you know that Applegreen has partnered with FuelService to make fuel stations more accessible? Through FuelService, drivers can now contact Applegreen stations ahead of their arrival and see if they are able to assist them at the pump. Once they […]

PATIENT SAFETY NOTIFICATION: NASOGASTRIC TUBE MISPLACEMENT

PATIENT SAFETY NOTIFICATION: NASOGASTRIC TUBE MISPLACEMENT AND ADVICE FOR ENHANCING MANAGEMENT OF NASOGASTRIC TUBE PLACEMENT Nasogastric (NG) tubes are used to provide liquid nutrition, fluid and medication to patients who require short-term nutritional support. They can also be used for the removal of gastric contents. NG tube placement is common practice and many are placed […]

Anam Cara support group for bereaved parents

Anam Cara provides information, resources and bereavement support after the death of a child of any age and through all circumstances to all bereaved parents. They will host a very special online group on a monthly basis, starting on Tuesday 15th March at 7pm. The group is specifically for parents living with no surviving children. […]

#Resolution4Rare

MDI encourages you to join the global community of people living with rare conditions, led by Rare Diseases International, EURORDIS – Rare Diseases Europe and the NGO Committee for Rare Diseases, in calling for a UN Resolution that recognises the complex challenges faced by people living with rare condition, and promotes full participation and inclusion […]

LGMD Awareness Day

Limb Girdle Muscular Dystrophy (LGMD) Awareness Day – 30 September – is a collaborative effort to raise awareness globally of the rare neuromuscular conditions known as LGMD. As part of Limb Girdle Muscular Dystrophy Awareness Day, we are sharing facts about the condition https://www.lgmd-info.org/what-is-lgmd/lgmd-facts/. Please LIKE, COMMENT and SHARE this post to help raise awareness of LGMD! We invite everyone […]

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