Parents' Info Pack
Information for Parents Living with Duchenne
Living with Duchenne can feel daunting – especially when you’re trying to find reliable information. Below are trusted resources to help you understand care, treatment options, and support available for your child and your family.
Clinical Trial
Learn what clinical trials are, what taking part involves, and view trials currently running in the UK.
This can help you understand whether a trial might be right for your child and family.
Care Guidelines & Standards
These guidelines explain best practice for caring for someone living with Duchenne – from childhood through adulthood.
- Duchenne Care Guidelines (Treat-NMD)
https://www.treat-nmd.org/resources-and-support/care-guides/dmd-care/ - UK Clinical Care Recommendations (DMD Care UK)
https://dmdcareuk.org/clinical-recommendations
https://dmdcareuk.org/ - International Standards of Care (The Lancet / CDC)
These are the global care standards used by clinicians worldwide.
Emergency & Ongoing Care
Practical guidance to support everyday health and emergencies.
- Emergency Care for Duchenne
https://dmdcareuk.org/emergency-support - Respiratory Care
https://res.cloudinary.com/studio-republic/images/v1706528182/DMDCare-UK-Respiratory-care-guide/DMDCare-UK-Respiratory-care-guide.pdf - Cardiac (Heart) Care
https://www.duchenneuk.org/wp-content/uploads/2022/11/DMD-Care-UK-Cardiac-patient-information-digital.pdf - Bone Health
https://res.cloudinary.com/studio-republic/images/v1690291410/DMD-Care-UK_Bone-health-leaflet/DMD-Care-UK_Bone-health-leaflet.pdf - Adrenal Insufficiency
https://www.duchenneuk.org/wp-content/uploads/2022/07/DMD-Care-Adrenal-insufficiency-leaflet-digital-updated-July-22.pdf - Puberty & Testosterone
https://www.duchenneuk.org/wp-content/uploads/2022/08/DMD-Care-leaflet-puberty-Aug-22-update-digital.pdf
Mental Health & Wellbeing
Living with Duchenne affects the whole family – emotional well-being matters just as much as physical care.
- Mental Health Support for Duchenne
https://dmdcareuk.org/mental-health-support - Additional family wellbeing resources
https://connectedchildhealth.com/for-patients-and-families/
A gentle reminder
You don’t need to read or understand everything at once.
Take things at your own pace, come back to these resources when you need them, and reach out for support whenever it feels overwhelming.