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LAST CHANCE: What’s your Rare Reality – Survey closing Nov 1

Rare Diseases Ireland are asking you to tell them your experience of healthcare while living with a rare condition in Ireland. They want to understand the challenges people living with rare conditions face accessing diagnosis, treatment and care. With your help they can advocate for improved health services for everyone living with rare conditions in […]

‘Accepting and Connecting with Muscular Dystrophy’ – new book by MDI member

Our warm congratulations to MDI member, Siobhán Dunleavy, on the publication of her book, ‘Accepting and Connecting with Muscular Dystrophy’. We are really looking forward to reading it! Siobhán, aged 29 years old, was diagnosed with muscular dystrophy at 21. In her book, she tells her personal story of how being diagnosed with a life-changing […]

We Act Ireland launches today!

We’re so excited to be part of @WeActIreland launching today – it’s all about celebrating the amazing stories behind Ireland’s charities and community groups. This video is just a snapshot of the brilliant work happening across the country every single day. #WeAct You can watch it here.

PPI Research

Public and Participant Involvement in Research (PPI) Muscular Dystrophy Ireland are inviting people living with neuromuscular conditions, their carers, and their families, to join a panel of PPI contributors. The purpose of the PPI panel is to support research and researchers seeking new treatments and therapies for neuromuscular conditions. This is an opportunity for people […]

Cork launch of campaign for more neurology nurses

Muscular Dystrophy Ireland is supporting the #patientsdeservebetter campaign for more neurology nurses which is coming to Cork for the month of November. Register for the online launch at 12pm on 2 November here. And you can find out more about the campaign here.  

WEBINAR ON AIDS / ADAPTATIONS TO ASSIST DISABLED DRIVERS

Join Disabled Drivers’ Association Ireland at 5pm on this Thursday 21st October for a FREE webinar. This webinar will explore the various aids / adaptations available to assist disabled drivers. It will cover: 1. Helpful Tips 2. Most Common Driver Adaptations – Hand Controls, Steering Aids, Left Foot Accelerator 3. Seating, Storage and Lift. Register in […]

Disability Federation of Ireland baffled that the Budget is not meeting its minimum investment of €350m in disability services

The Government has estimated €350-€600 million would be needed from Budget 2022 to address unmet need in disability services[1]. Today’s Budget shows they are ignoring their own advice, which is baffling to the Disability Federation of Ireland, DFI. “As it stands, disability services funding is only slightly increased beyond last year’s Budget level. The Government’s […]

Webinar: Gene Therapy Clinical Update

Parent Project Muscular Dystrophy has invited Sarepta Therapeutics to present details of the EMBARK clinical trial (SRP-9001-301). They are hosting a webinar on Wednesday, October 13th at 3 PM EST. PLEASE NOTE: Webinar takes place at 3pm USA Eastern Standard Time which is 8pm IRISH TIME. For more details see: http://join.parentprojectmd.org/site/MessageViewer?em_id=31904.0&dlv_id=26669

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