Action Duchenne in partnership with Professor Kate Bushby and Dr Tracy Willis at Newcastle Centre for Life have developed a new Accident and Emergency file for patients living with Duchenne and their families.

Most people living with Duchenne never need to go to an A&E unit however if your child or young person is unwell and needs to go to hospital this file contains vital information that you can pass on to the A&E team. It will enable them to have information on how to contact your own specialist consultants and your most recent test results.

Many doctors and consultants in A&E might have little specialist knowledge of Duchenne. Information in the file on recent lung function and heart checks for example are vital in emergency situations. Information on the drugs you are taking is also crucial to emergency teams. Simply fill in all your personal details and ask your own clinician to complete all the sections in the file.

Then keep the file handy and take it with you whenever you go into hospital.

The form can be got on the Action Duchenne website or can be got by clicking the link below.

http://www.actionduchenne.org/AEfile

For your own copy and so that we can send you updates please fill in the form below. Our office will send you your free copy.

 

The DMD Registry acts as a database for patients diagnosed with Duchenne or Becker Muscular Dystrophy. With the patients’ and parents’ consent, volunteers can be drawn from the Registry for clinical research trials of whch a number are underway in the Netherlands, the UK and the United States.

There are approximately 150-200 boys in Ireland with this condition, who can now be included in the registry, following the collaborative working of Action Duchenne, Duchenne Ireland and Muscular Dystrophy Ireland along with the genetics laboratories in London and Dublin. Details of all those registered remain anonymous and all data is kept confidential.

The registry will also facilitate research by collecting relevant data and making it available for specified research projects. Professionals will be able to use the information provided to understand the disease better to develop treatments. It will also strengthen contact between health professionals, researchers and Registry participants and develop their ability to deliver treatments for this disease.

Full details on how the Irish Registration Process are available here

      

Duchenne Ireland is delighted to announce that is has become a member of the Treat-NMD network of excellence for Neuromuscular Diseases around the world.

TREAT-NMD is a network for people with neuromuscular diseases and professionals working in the field. It aims to advance diagnosis and care and develop new treatments for the benefit of patients and families, working closely with scientists, healthcare professionals, the pharmaceutical industry and patient groups around the world.

Duchenne Ireland is committed to fostering the details outlined in the Treat-NMD Member Charter within Ireland and wherever we represent Children with Duchenne internationally in the aim of facilitating change in the natural course of Duchenne.

We look forward to all of our supporters continued help to ensure we have the resources to continue reaching out to similar international networks of excellence and researchers to drive for effective therapies for Duchenne.