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Survey on Access to Health Information

June 2nd, 2021

 

Dear MDI Member,

We have been approached by IPPOSI – the Irish Platform for Patient Organisations, Science and Industry – to invite you to share your perspective on access to health information.

IPPOSI hosted a Citizens’ Jury on Access to Health Information with 25 members of the public in April 2021. The findings from this jury will be presented to health policy makers later this year, and they are keen to ensure that the perspective of individuals who regularly use the health service to manage a chronic and/or rare condition (commonly referred to as ‘patients’) is also reflected in dialogue with the health sector.

In an effort to capture this perspective, IPPOSI has prepared a short survey, they have asked that you complete the survey by 5pm on Wednesday, June 9th, 2021 if you are keen to share your perspective on this important issue.

We are a member of IPPOSI, and we believe that the topic of access to health information is an important one. We encourage you to take this opportunity to share your perspective and to have it reflected in the future dialogue with health policy makers.

Link to Survey
https://ipposi.us5.list-manage.com/track/click?u=62f1024797b7404f5f90d8922&id=2df4dfe9cc&e=d812a4ebe9

Kind regards
MDI Team
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Categories: Lifestyle

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