Bone Health in Duchenne muscular dystrophy

Your views matter about bone health. There’s still time to take part in an important survey to improve bone health in Duchenne. The links below will take you to the survey (Closes end April 2018).

Takes about 10 minutes and you can take part if you are over 14 years old and living with Duchenne or if you are a parent or main carer of a child (any age) with Duchenne. The results will be discussed at a ENMC (European Neuro Muscular Centre) workshop in June.

The survey is part of the ScOT-DMD Bone Health

More information

If you have any queries please contact Angela Stringer on 020 7250 8240 or [email protected]

Latest

Runners we salute you!

Whatever distance you have pounded the streets this year, you can feel proud to be part of a team that has covered over 1,250 miles and contributed to over £64,000 worth of fundraising!
Action Duchenne Christmas Appeal

Jonathan Stringer lived until he was 27. Some people with Duchenne have longer, but many don’t. With your support we can change this. Text DCHN79 £(amount) to 70070
Duchenne introduction - shown at Harry Hill's Comedians Sing for Action Duchenne event
Thank you to our Duchenne parents

Wave Life Sciences announce phase 1 trial results

Wave Life Sciences has announced results of the phase 1 trial of the WVE-210201 – a potential drug that induces skipping of exon 51 of the dystrophin gene
Harry Hill's 'Comedians Sing Christmas Songs' for Action Duchenne was a hit!
ENMC Workshop in Amsterdam

Our Director of Research, Neil attended the 238th ENMC workshop.
Action Duchenne present parent's perspective to healthcare professionals

We as a charity relish every opportunity to advocate life with Duchenne to professionals in the Healthcare field.
Santhera acquires rights to vamorolone

Santhera has announced that they have acquired the rights to vamorolone - a drug that has been developed and is currently being tested in trials by Reveragen.
Sarepta Therapeutics has announced the latest results from their gene therapy trial

Sarepta therapeutics has announced a further set of preliminary results from their early-stage gene therapy trial
Catabasis starts Phase 3 trial of edasalonexent

Catabasis announce that a Phase 3 trial of edasalonexent has started, with trial centres to open shortly – first in the USA and then in Europe.
Sarepta Therapeutics gene therapy trial to continue

The FDA has lifted the Clinical Hold that was issued to Sarepta Therapeutics phase I/II gene therapy trial
Sarepta receives negative opinion following CHMP review of eteplirsen

Sarepta has received a negative opinion of eteplirsen following a second review by the European Medicine's Agency Committee for Medicinal Products for Human Use (CHMP).
Vamorolone trial results published

The results of the first clinical trial of vamorolone (which finished in 2016) in people living with Duchenne were published last week

Donate to Action Duchenne

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Our team
Conference registration

Register for the Action Duchenne International Conference 2018
GDPR updating personal information

Please let us know if the personal information that we hold about you needs to be corrected or updated.
What are the signs and symptoms of Duchenne?
How are drugs licensed and approved in the UK?
Our vision

A world where people's lives are no longer limited by Duchenne and Becker muscular dystrophy
Revised Standards of Care for Duchenne muscular dystrophy

Action Duchenne originally co-funded the translation of the original standard of care guidelines, into the widely used family guide and continues to be at the forefront of these developments.
Adults living with Duchenne muscular dystrophy

We have always advocated for the best standards of care for people living with Duchenne. Early on, we identified the importance of helping young people living with Duchenne to equip themselves with the skills and power to achieve the best life possible.
Guides and information

As well as funding research into potential treatments and one day a cure, we also produce a range of resources to benefit the global Duchenne community.