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Second booster vaccine available for over 65’s and those with a weakened immune system

People aged 65 years and over are now eligible for their second COVID-19 booster vaccine. Those with a weak immune system aged 12 and over can also get their second booster, when it is due. Those who are due their second COVID-19 booster vaccine can: Visit the following link for more information https://www2.hse.ie/screening-and-vaccinations/covid-19-vaccine/get-the-vaccine/covid-19-vaccine-booster-dose/ Book a […]

Charcot-Marie-Tooth UK Conference 6 and 7 May

Charcot-Marie-Tooth UK’s Conference 2022 will be held online on Friday 6 and Saturday 7 May. Find out more about their excellent line-up of speakers, including Professor Mary Reilly, the UK’s leading authority on CMT, and book here.  

FSHD European Survey Launched

An important study between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University has launched this week. There is a growing interest from several pharma companies to run clinical trials in FSHD in Europe. FSHD Europe is working with the Pharmaceutical Industry to ensure that when trials are developed, they […]

MDI invites expresssions of interest in U18 Youth Camps 2022

As the public health restrictions have now thankfully been lifted, we are happy to announce the dates and venues for MDI’s Youth Summer Camp Programme 2022 for U18 members. The programme is a week-long overnight Youth Camp for younger members planned and coordinated by our MDI Youth Work Team. For more information and to let […]

ILMI online memorial to James Brosnan, Dr. John Roche and Hubert McCormack

We wish to share an invitation from Independent Living Movement Ireland to disabled people. As Long As We Remember, They Live With Us: Wednesday 6th April 7:30pm A Memorial to James Brosnan, Dr. John Roche and Hubert McCormack In a relatively short space of time, the Independent Living Movement has lost three members, mentors, comrades, […]

Powerchair Football Taster Session – Bunclody, Co Wexford

The Football Association of Ireland are hosting a taster session for Powerchair Football in Bunclody AFC, Wexford on Friday 8th April. They wish to reach out to as many people as possible to come along on the day. If it goes well, they will begin the process of starting a new Powerchair Football Team from the […]

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