Searching for a cure, Improving lives

Webinar Recordings from Conference 2016

We are delighted to publish the Webinar from Friday 11 November along with a number of speaker presentations from the hugely successful 2016 Action Duchenne International Conference. (Saturday is unavailable as some presentations could not be made public).

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Please click on the links below to view the Webinars. You may find the time points below helpful in accessing specific presentations.

AM Friday 11 November click here for Webinar

Welcome – Diana Ribeiro, CEO Action Duchenne (5:26 to 16:07)

Living well and independently – Ros Quinlivan (16:30 to 30:24)

Living well and independently – (DMD Pathfinders) Dr Jon Hastie, Mark Chapman, Guojon Reykdal (31:49 to 50:52)

Current clinical trial updates – Michela Guglieri (59:35 to 1:46:33)

Cardiac (heart) research – John Bourke (2:11:23 to 2:50:30)

Cognitive research and behaviour – Veronica Hinton and Valeria Ricotti (2:50:35 to 3:41:42)

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PM Friday 11 November click here for Webinar

Access to medicines panel session – Diana Ribeiro introduction (12:15 to 13:24)

  • EMA and patient engagement – Nathalie Bere (13:30 to 32:02)
  • UK Early Access to Medicines Scheme – Daniel O’Connor (32:15 to 44:42)
  • Sheela Upadhyaya (44:48 to 57:40 audio only)
  • Edmund Jessop (57:42 to 1:05:39 audio only)
  • What is the ABPI – Paul Schofield (1:05:50 to 1:10:53)
  • Panel questions from the floor (1:11:30 to 1:28:56)
  • New generation exon skipping – Matthew Wood and Aurelie Goyenvalle (1:33:34 to 2:19:41 audio only)

How to have the best transition to adulthood: lessons from the Takin’ Charge project – Janet Hoskin, Celine Barry with young people & families from Takin’ Charge and DMD Pathfinders/Steering Committee (2:23:07 to 3:09:35)

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Please click here to view presentations from the International Conference.


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