September 7 is World Duchenne Awareness Day. On this day we join the international Duchenne community to raise the profile and awareness of the …
Alex James release new single
The phenomenal North-East based alternative indie-rock band, Alex James, are set to make an unprecedented return, following the success of their debut …
In just 7 weeks, we’ll be on the road again
Duchenne Science on Tour 2 Where we'll be helping our families to make informed choices around really complex things like gene therapy and exon …
Translarna accepted by Scottish Medicines Consortium
A drug called Translarna can help treat an underlying condition of Duchenne muscular dystrophyAction Duchenne, Duchenne Family Support Group, Muscular …
Translarna accepted by Scottish Medicines ConsortiumRead More
Public statement from NICE
Action Duchenne and MDUK have received the following public statement from NICE which we can share with the community: "The Managed Access …
The Spires Federation school fundraising
The awesome Deborah Holland is taking on the mighty Peak District Challenge in July, inspired by her best friend Lindsay's youngest son Riley who …
Rare disease day
Rare diseases present unique challenges. Many families have never heard of Duchenne before a diagnosis. It might be the first case your GP has …
A message from Florence Boulton on Rare Disease Day 2021
Dear International Duchenne Community, Today, we take a moment from our daily lives to raise awareness about our community and share what it means …
A message from Florence Boulton on Rare Disease Day 2021Read More
Happy birthday John Miller
Dedicated Grandfather and our Scottish Advocate John Miller has selflessly created a birthday fundraiser for Action Duchenne to celebrate his 82nd …
Spreading the love with the £2 tweet
Donate just £2 and we'll send your tweet from the Action Duchenne Twitter account to over 6000 followers. It can be whatever you want (as long as …
What a difference a year makes
Blog by Florence Boulton, National Director This month marks the anniversary of the day I joined Action Duchenne. I remember it well, at the Annual …
Rare Disease Day 2021
Rare Disease Day 2021 will take place on Sunday 28 February. It is a chance to raise awareness amongst the general public and decision-makers …
