Article written by Jon Powton, Foster CarerFeeling relevant in a world where being different can feel like a crime is never an easy thing. Wearing the …
Send us your questions
In May, we launched our COVID-19 campaign #weneedanswers where we asked the Prime Minister, Secretaries of State for Health, Education and Work and …
Open letter from Deputy First Minister and Cabinet Secretary for Education and Skills
In May, we sent out letters directly to Prime Minister Boris Johnson, Secretaries of State for Health, Education and Work and Pensions, as …
Open letter from Deputy First Minister and Cabinet Secretary for Education and SkillsRead More
Open letter from Department of Education, Northern Ireland
In May, we sent out letters directly to Prime Minister Boris Johnson, Secretaries of State for Health, Education and Work and Pensions, as well as to …
Open letter from Department of Education, Northern IrelandRead More
Meeting with Genetic Alliance – COVID-19 information hub
We joined 21 other organisations at a meeting on 15 June, held by the Genetic Alliance UK. The aim of the meeting was to gather information to …
Meeting with Genetic Alliance – COVID-19 information hubRead More
Cross Party Group meeting on Rare, Genetic and Undiagnosed Conditions
Last week Action Duchenne attended a meeting of the Cross Party Group on Rare, Genetic and Undiagnosed Conditions at the Scottish Parliament. The …
Cross Party Group meeting on Rare, Genetic and Undiagnosed ConditionsRead More
Accident and Emergency Admissions
Simon and Shelley had a very productive meeting with the NHS Digital team last week who lead on data gathering and analysis. This forms a key part of …
Where’s my chair?
Action Duchenne’s Where’s my chair? campaign set out to achieve full wheelchair access for people living with Duchenne. We had a fantastic response …
Information about Translarna MAA
We’re working with Muscular Dystrophy UK to make sure that emerging treatments for Duchenne get to those who need them, as quickly as possible. Since …
Highlighting the importance of treatments for all
We recently wrote to the Medicines and Healthcare Products Regulatory Agency (MHRA) - the UK drug regulator - to highlight the importance of …
Call to action – Powerchair Football in Scotland
An update from our Scottish Advocacy Officer, John Miller: "At a Disability Cross Party meeting on the 27th November 2018, the Secretary of …
