A huge thank you to our patron, Harry Hill, who hosted one of Action Duchenne's biggest ever events last night. 'Comedians Sing The Christmas Hits' …
Harry Hill’s ‘Comedians Sing Christmas Songs’ for Action Duchenne was a hit!Read More
ENMC Workshop in Amsterdam
ENMC has a unique concept of facilitating and organizing workshops for experts in the field of neuromuscular conditions. Every month a group of 20 - …
Action Duchenne present parent’s perspective to healthcare professionals
Last Friday, our Community Fundraising & Marketing Officer, Lynnette, was asked to present Duchenne from a parent's perspective to a number of …
Action Duchenne present parent’s perspective to healthcare professionalsRead More
Santhera acquires rights to vamorolone
Santhera has announced that they have acquired the rights to vamorolone - a potential drug that has been developed and is currently being tested in …
Comedians sing the Christmas hits!
It's gonna be one unholy night of fun! We are delighted to announce that on 4th December 2018, our patron Harry Hill will be hosting a comedy …
WE NEED YOUR VOTE – Chelsea vs Fulham matchday collection
Help us to win the chance to hold a bucket collection at Stamford Bridge at the Chelsea vs Fulham game Sunday 2 December. WE NEED YOUR VOTES - …
WE NEED YOUR VOTE – Chelsea vs Fulham matchday collectionRead More
Sarepta Therapeutics has announced the latest results from their gene therapy trial
Sarepta therapeutics has announced a further set of preliminary results of a gene therapy trial that is using a harmless virus to deliver a small but …
Sarepta Therapeutics has announced the latest results from their gene therapy trialRead More
Catabasis starts Phase 3 trial of edasalonexent
Earlier this week Catabasis announced that a Phase 3 trial of edasalonexent in Duchenne has started, with trial centres to open shortly – first …
Sarepta Therapeutics gene therapy trial to continue
Sarpeta Therapeutics has announced that the Food and Drug Administration (FDA – the drug regulator in the USA) has lifted the Clinical Hold that was …
Sarepta Therapeutics gene therapy trial to continueRead More
Sarepta receives negative opinion following CHMP review of eteplirsen
We've just heard the disappointing news that Sarepta has received a negative opinion of eteplirsen following a second review by the European …
Sarepta receives negative opinion following CHMP review of eteplirsenRead More
Vamorolone trial results published
The results of the first clinical trial of vamorolone (which ended earlier this year) in people living with Duchenne were published last week in …
Berardelli family fundraise at Lochaber Agricultural Show
Beneath the spectacular backdrop of Ben Nevis, the Lochaber Agricultural Show is an amazing celebration of what rural Lochaber has to offer. …
Berardelli family fundraise at Lochaber Agricultural ShowRead More
