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).

Photo by www.samallardphotography.com

Webinar

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)

Photo by www.samallardphotography.com

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)

Photo by www.samallardphotography.com

Presentations

Please click here to view presentations from the International Conference.

Donate

Support Action Duchenne with a monthly or one off donation

Donate

Events

View our events

View All Events

Registry

Join the DMD registry for access to clinical trials

Register

Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

Tell me more

Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

Tell me more

FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

Tell me more

Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

Tell me more

Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

wordpress counter

Stay informed with regular updates from Action Duchenne