The following information details the resources available for families supporting their sons with Duchenne from diagnosis through all of the later stages of their care, as well as processes for DMD Patient registry self registration

Duchenne Ireland thanks all of the many organizations for publishing these documents for Patient and Carer use.

Standards For Diagnosis

The Action Duchenne Learning and Behaviour Toolkit can be found here

CDC - Diagnosis and Management of Duchenne

(International Consensus Standards Of Care for Duchenne) 

CDC Published Standards of Care for Duchenne can be found here

The Family Friendly Guide is available here

Details on registering your son on the DMD Registry can be found here

Treat-NMD has a dedicated page for standards of care for Duchenne that gets updated frequently here

For Research and Ongoing Care presentations/talks, please see our Translational Research page for more information

Eurordis - European Organization for Rare Diseases

Eurordis have a number of publications related to the following topics here:

• What is a Rare Disease
• What is an Orphan Drug
• Paediatric Drugs and Rare Diseases
• Diagnosis Delays in Rare Diseases
• Euro Bio-Bank
• Eurordis Charter for Clinical Trials In Rare Diseases
• Rare disease prevelance in Europe