Searching for a cure, Improving lives

Presentations from Regional Roundtables Winter 2017


We’d like to thank everyone for coming along to our three Regional Roundtables in February 2017; Northern Ireland (06/02/17), Scotland (07/02/17) and Wales (13/02/17).

Below are the presentation slides from all three events. The sections are split into four categories: Research, Bone Health and Respiratory Management, Access to Medicines and Children’s Hospice Association Scotland (CHAS).


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 ResearchBone Health and Respiratory ManagementAccess to MedicinesCHAS (Scotland only)
Northern Ireland (06/02/17)Diana Ribeiro (Action Duchenne) - Clinical Trial UpdateIsobel Doughlad, Michael Shields and Sandya Tirupathy (Queens University Belfast) -
Bone Health and DMD
Michael Shields (Queens University Belfast) - Respiratory Management
Fiona McLaughlin
(Northern Ireland Rare Disease Partnership)
Scotland (07/02/17)Diana Ribeiro (Action Duchenne) - Clinical Trial Update

Alan McNair (Chief Scientific Office) - Health & Social Care Research Strategy 2015-2020
Jarod Wong and Shuko Joseph (University of Glasgow) - Bone Health in DMD and SCOT-DMD Update Aileen Campbell MSP - Access to Medicines in ScotlandClaire Turnbull (Transition Manager)

Sue Hogg (Director for Children and Families)
Wales (13/02/17)Diana Ribeiro (Action Duchenne) - Clinical Trial UpdateDr Zaheer Yousef (Cardiff Hospital) - Local services and ResearchNick Meade (Genetic Alliance) - Part One and Part Two - Access to Specialised Medicines in Wales


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If you have any questions or want to know more information about the presentations above please contact Diana Ribeiro (CEO) on 020 8556 9955 or via


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