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    • Webinar recordings
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Portrait of Duchenne – Ravi’s good life

14 August 2017 by abzali123

In the seventh interview in the “Portrait of Duchenne” series, our Canadian partners, La Force talked with Ravi Mehta at the Action …

Portrait of Duchenne – Ravi’s good lifeRead More

Test with the Potential to More Reliably Screen for Duchenne in Newborns is Developed

14 August 2017 by abzali123

Researchers at Cardiff University, in collaboration with biotechnology company PerkinElmer, have created a more reliable test to screen newborn babies …

Test with the Potential to More Reliably Screen for Duchenne in Newborns is DevelopedRead More

Mitobridge’s Potential Treatment for Duchenne Advances into Clinical Development

9 August 2017 by abzali123

Mitobridge, Inc., a pioneer in the discovery and development of products that improve mitochondrial function, today announces a key milestone with the …

Mitobridge’s Potential Treatment for Duchenne Advances into Clinical DevelopmentRead More

Worldwide licence for new drug SOMO266 as SOM Biotech expands to the United States

9 August 2017 by abzali123

The med-tech biopharmaceutical company, SOM Biotech, has granted a licence agreement with Corino Therapeutics Inc. for its first product SOMO266 for …

Worldwide licence for new drug SOMO266 as SOM Biotech expands to the United StatesRead More

Northern Ireland – ‘My Healthcare Passport’

1 August 2017 by abzali123

A new study has started at Queen’s University Belfast.  They are looking for young people aged 16-24 with a life-limiting condition and who …

Northern Ireland – ‘My Healthcare Passport’Read More

Give your feedback to Summit in their Utrophin modulator patient/family survey

25 July 2017 by abzali123

Summit are looking for feedback from caregivers and patients themselves in their commitment to working alongside patients, their families …

Give your feedback to Summit in their Utrophin modulator patient/family surveyRead More

Parity of esteem for people affected by neurological conditions – new report from the Neurological Alliance

25 July 2017 by abzali123

The likelihood of having a comorbid mental health condition is higher for neurology patients than for the long-term conditions patient population …

Parity of esteem for people affected by neurological conditions – new report from the Neurological AllianceRead More

Portrait of Duchenne – edasalonexent

25 July 2017 by abzali123

In the fifth interview of the series “Portrait of Duchenne”, our Canadian partners La Fondation La Force talked with Joanne …

Portrait of Duchenne – edasalonexentRead More

Portrait of Duchenne – repurposing existing drugs

25 July 2017 by abzali123

In this, the sixth interview in the series Portrait of Duchenne, our Canadian partners La Fondation La Force talked with Steve Winder at the Action …

Portrait of Duchenne – repurposing existing drugsRead More

Sarepta and BioMarin resolve exon skipping patent litigation

18 July 2017 by abzali123

Sarepta and BioMarin have executed a license agreement that provides Sarepta Therapeutics with global exclusive rights to BioMarin’s Duchenne muscular …

Sarepta and BioMarin resolve exon skipping patent litigationRead More

Raxone is the first Duchenne drug approved through the Early Access to Medicines Scheme

22 June 2017 by abzali123

We are excited to share with the Duchenne community, that Santhera Pharmaceutical’s drug Raxone, is the first Duchenne drug approved via the Early …

Raxone is the first Duchenne drug approved through the Early Access to Medicines SchemeRead More

What Raxone being given approval through the EAMS scheme means for the Duchenne community

22 June 2017 by abzali123

Over a number of years we have worked with Santhera Pharmaceuticals and other Duchenne charities in relation to Santhera’s Phase III Clinical Trial …

What Raxone being given approval through the EAMS scheme means for the Duchenne communityRead More

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