Register in your National Patient Registry

If you are a patient, please consider registering in your National Patient Registry. There are several reasons why this is important:

  • The registries are the easiest and most reliable way of informing patients and their families of the most up-to-date care standards.
  • Registering increases the likelihood of being able to participate in trials for which you are eligible, and helps to speed up research about the disease.
  • Registering increases the visibility of the disease within your country, and can add pressure to improve health service provision.

For more information and a list of available registries, please see the Registries page.

View Duchenne care resources

CARE-NMD will make available a range of resources which help to support high-quality care for Duchenne muscular dystrophy.
Whilst some of these are aimed at medical professionals, others are written specifically families and patients.

The most important of these is the Guide for Families, which is available in a range of languages.

You may find that the Standards of Care article, on which the Guide for Families is based, may also be useful.

A series of useful guides to genetics and genetic testing are available on the EuroGentest website.