Searching for a cure, Improving lives

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EURORDIS 2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

Posted on: February 28th, 2017 | 0 comments

Angela Stringer, our Duchenne Patient Advocate and Registry Curator was at last week’s 2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies held in Brussels. Patient groups from the rare disease communities across Europe were well represented as were major pharmaceutical companies, academia, EMA, NICE and all stakeholders.  In the opening session it was

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Writing to your MP for Rare Disease Day

Posted on: February 22nd, 2017 | 0 comments

In the run up to Rare Disease Day we want to ensure that your voice is heard by those in power. With that in mind we have drafted a template email for people to send to their local MP, which is attached below. We believe Rare Disease Day taking place on 28 February 2017 provides a

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Blog: Kenny’s Story

Posted on: February 21st, 2017 | 0 comments

My son Kenny Cloke is 16 years old and has Duchenne Muscular Dystrophy, but he has never let this stop him from living his life to the full and looking to achieve his dreams. As parents, myself and my husband Graham are incredibly proud of him and I also want to give hope to all

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Scotland Roundtable

Posted on: February 15th, 2017 | 0 comments

On Tuesday 7 February 2017, Action Duchenne hosted a Scottish roundtable at the David Lloyd centre in Edinburgh.  It provided an excellent opportunity for Scottish families to meet with leading clinicians, hear from Scotland’s Public Health and Sport Minister, Aileen Campbell and give a greater understanding of the medical research taking place which is helping

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Wales Roundtable

Posted on: February 15th, 2017 | 0 comments

On Monday 13 February 2017, Action Duchenne hosted a Wales Roundtable at the Clayton Hotel in Cardiff. It gave Welsh families the chance to get a better understanding of the future outlook for those living with Duchenne in Wales and to be given the opportunity to see first-hand progress being made which could make major

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Northern Ireland Roundtable

Posted on: February 15th, 2017 | 0 comments

On Monday 6 February 2017, Action Duchenne hosted a Northern Ireland Roundtable at the Clayton Hotel in Belfast. It provided a great chance for Northern Irish families to meet with a range of experts and be given a greater insight into research taking place which is helping improving the lives of those living with Duchenne

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UCL and GOSH recruiting for eNHANCE: Eye tracking Robotic arm support trial

Posted on: February 14th, 2017 | 0 comments

The eNHANCE project has been given the green light to start recruitment at Great Ormond Street Hospital. For this project, UCL and GOSH hope to recruit 10 adolescents (12-18 years of age) with Duchenne muscular dystrophy to test the usability of an eye tacking controlled robotic arm support at GOSH. As they are targeting adolescents

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Amazing London Marathon Dinner at Jamie’s Italian!

Posted on: February 7th, 2017 | 0 comments

  On Saturday 3 February Andrew Parkinson and Andrew Pearson, two of our London Marathon 2017 runners, organised a wonderful charity dinner at Jamie’s Italian on Threadneedle Street in London for Action Duchenne. The evening raised over £4000 and we would like to thank them for their support and dedication in putting this event on

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Catabasis Reports Disappointing Results for Part B of the MoveDMD Trial

Posted on: February 3rd, 2017 | 0 comments

The MoveDMD trial with edasalonexent (CAT-1004) in Duchenne muscular dystrophy has just completed Part B, and Catabasis has released the top-line results. Part B of the MoveDMD trial did not meet its primary endpoint, which was to demonstrate a statistically significant decrease in T2 MRI with edasalonexent after 12 weeks compared to placebo in boys affected by Duchenne.

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A very warm welcome to our new Campaigns Officer

Posted on: February 1st, 2017 | 0 comments

We are very excited to introduce our new Campaigns Officer Stephen Hoffman. Stephen studied Politics and Parliamentary Studies at the University of Leeds and has worked in various roles in campaigning both inside and outside of Parliament, including for an MP. ‘As it is my first day at Action Duchenne I would like to introduce

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Amazing London Marathon Dinner at Jamie’s Italian!

February 7th, 2017

  On Saturday 3 February Andrew Parkinson and Andrew Pearson, two of our London Marathon

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Positive Preclinical Research on the Edasalonexent (CAT-1004) Program

January 6th, 2017

  Catabasis announced the publication of preclinical data on the edasalonexent program, a potential disease-modifying

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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