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Reminder – Patient Education Programme

December 7th, 2020

REMINDER:  

The call for applications to the 2021 IPPOSI Patient Education Programme in Health Innovation is closing at midnight on Sunday, December 13th, 2020.

All of the information you need to complete the application, including a Guide for Applicants, a link to the online application form, as well as an instructional webinar are available on the IPPOSI website at the link below.

PLEASE NOTE:

The programme is being led by IPPOSI, in partnership with a number of education partners, and is inspired by IPPOSI’s involvement in EUPATI.  The 2021 programme will cover the following topics:

  1. Understanding Clinical Trials – delivered by the University College Dublin Clinical Research Centre
  2. Regulatory Affairs, Medicinal Product / Medical Device Safety, and Pharmacovigilance – delivered by the Health Products Regulatory Authority (HPRA)
  3. Health Technology Assessment principles and practices – delivered by the Discipline of Medicine & Therapeutics, Trinity College Dublin, in association with the National Centre for Pharmacoeconomics (NCPE) and the Health Information & Quality Authority (HIQA)

Applications will be accepted from:

  • Employees/volunteers of patient organisations in the Republic of Ireland & Northern Ireland
  • Patients with a chronic and/or lifelong illness/condition who are not affiliated with a patient organisation and who participate or intend to participate in projects / activities / committees etc. to represent his/her personal experience as a patient and/or the perspective of an informal group of patients
  • Family member / carer (not affiliated with a patient organisation) of a patient with a chronic and/or lifelong illness/condition who participates or intends to participate in projects / activities / committees/etc. to represent patients.

Please examine all of the supporting documents on the IPPOSI website before making your application to ensure eligibility, and a thorough understanding of the commitments involved.

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Categories: Uncategorized

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