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UN Recognition of People Living with Rare Conditions

UN General Assembly formally adopts resolution recognising the over 300 million Persons Living with a Rare Disease worldwide and their families On 16 December 2021, the UN adopted the first-ever UN Resolution on ‘Addressing the Challenges of Persons Living with a Rare Disease and their Families.’ The Resolution focuses on the importance of non-discrimination and […]

COST OF DISABILITY RESEARCH REPORT PUBLISHED BY GOVERNMENT

Indecon’s Cost of Disability research report has been published by the government. Cost of disability is an issue that Disability Federation of Ireland have been advocating on for a couple of decades, so it is welcome to now see publication of this extensive report. The 200-page report examines the extra costs faced by disabled people. […]

COVID-19 VACCINE BOOSTER- more ways to get your vaccine

People aged 50 and older, healthcare workers and people aged 16 and over with a high risk condition can now get a COVID-19 vaccine booster dose. It is very important to get your COVID-19 vaccine booster when it is due. Without a booster, you are more at risk of serious illness if you get COVID-19. […]

CMS Research and Treatment – online event 15 December

Myaware – UK charity dedicated to the care and support of people affected by myasthenia – will be hosting a Zoom session on Research and Treatment regarding Congenital Myasthenia Syndrome (CMS) with Dr Sithara Ramdas, Consultant Paediatric Neurologist. Dr Ramdas is based at the John Radcliffe Hospital in Oxford and has extensive experience working with […]

Accounts Payable Administrator – Closing 15 December

Applications are currently open for an Accounts Payable Administrator with National Treasury Management Agency (NTMA) based in Dublin, ring-fenced exclusively for candidates with disabilities, specific learning difficulties or a mental health condition. This role will commence in early 2022 and is for a duration of 6 months. The Financial Planning and Operations (FPO) team sits […]

Celebrating leadership and participation of people with disabilities – UN International Day of Persons with Disabilities

Today is United Nations’ International Day of Persons with Disabilities. This year’s theme – Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world – calls to mind many MDI members. Today, we are putting a spotlight on Diana O’Donohue who is actively involved with the local community through her […]

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