In this section
National Meeting Saturday April 21st Birmingham
REGISTER ON FORM BELOW
On Saturday April 21st at the Birmingham Hilton Metropole, (B40 1PP), map here, Action Duchenne will be holding a key one day meeting for UK Duchenne families and supporters.
The meeting will discuss the implications of the Coalition Government's reorganisation of the NHS, and the impact on Standards of Care for Duchenne. We will assess current patient access to International Standards of Care for Duchenne with examples of best practice from Great Ormond Street Hospital in London.
There will be workshops for parents who have chosen to participate in our 'Letting Go' project, which is part of Action Duchenne's exciting new Transition Project.
You can sign up online now, the conference is free and we will be providing creche facilities. Its your chance to get involved and support Action Duchenne led National Campaigns in Wales, Northern Ireland, Scotland and England. Get your voice heard!
Action Duchenne National Meeting Agenda
8.45-9.00 Registration and welcome
9.00 – 10.30 Will there be genetic treatments for all Duchenne patients in 3-5 years?
Review the current progress of genetic and drug research and get the views of our expert panel
Panel will include – Nick Catlin Head of Research Action Duchenne, Dr John Bourke Cardiologist Newcastle, Dr Keith Foster Royal Holloway College
10.30- 10.40 Coffee Break
10.40 – 12.00 What should a good quality of life for boys living with Duchenne look like in 5 years time?
What factors are most important to you? Join with our panel to discuss how we can improve the Quality of life for those living with Duchenne and get access to the best possible medical care.
Panel will include – Janet Hoskin Takin’ Charge project and Decipha, Celine Barry Takin’ Charge Project , Dr Ros Quinlivan GOSH, Neil Williamson Richard House Hospice.
12.00 - 13.15 How do we achieve the changes we need?
How can we engage with the Government and Regulatory authorites? How can we raise more funds ourselves to move research forward and improve Quality of Life?
Panel will include – Kathy Weddell parent and NAC, Eilidh Macpherson Action Duchenne Campaigns Manager, Iain Clarke RDO Action Duchenne, Local MP’s researcher, Weber Shandwick (political consultantancy firm)
13.15 – 14.00 AGM – the Impact Action Duchenne has had over the last year and Aims and Objectives for the coming year and Lunch
14.00 – 16.40 Workshops
Including –
• Takin’ Charge and Letting Go – Action Duchenne project to improve the Quality of Life
• Decipha – Behaviour and Learning Problems
• Internet Safety
• skipDuchenne- discussion group- how we can deliver new genetic drugs
• Meeting your MP – a guide
• Disability Law Services
• Reach your fundraising goals – with the Action Duchenne fundraising team
16.40 ‘A life worth living’ – Screening of trustee Jon Hastie’s film
17.00 Close the day
Please get in touch if you have any questions,
Eilidh
Campaigns and Advocacy Manager
eilidh@actionduchenne.org / 020 8556 9955
REGISTER HERE:
