About DMD Awareness
An independent, English-language project that publishes informational writing about Duchenne Muscular Dystrophy. Not affiliated with any pharmaceutical company, government, hospital, advocacy organization, or political group.
Why this site exists
Duchenne Muscular Dystrophy (DMD) is a rare, progressive genetic condition that mostly affects boys. Families navigating a DMD diagnosis need information that is plain, accurate, and honest about uncertainty. Much of what circulates online is either too technical, too promotional, or out of date. This project tries to fill the gap between dense medical literature and good plain-language explainers.
Editorial standards
- Sources are linked inline. Every empirical claim that is not common medical knowledge points to a public, identifiable source.
- We do not give medical advice. Nothing on this site replaces a conversation with a qualified clinician. Treatment decisions belong to the patient and their care team.
- We do not promote. No therapy, clinic, product, organization, or political position is endorsed.
- We are honest about uncertainty. Where evidence is evolving, we say so. Where outcomes vary, we say so.
- We avoid identifying real patients. Stories are framed editorially; we do not publish photographs of identifiable children with DMD.
How posts are produced
Articles and blog posts are drafted from public sources (peer-reviewed papers, regulatory documents, patient organization guidance) and then edited for clarity. Each piece lists the sources it relies on. Where a claim turns out to be wrong or outdated, we update it and note the change.
Who writes here
Blog writing is signed by Helena Marsh, an independent health writer covering rare disease care, family experience, and access policy. Helena is not a clinician. Where a post would benefit from clinical review, it is flagged accordingly. Long-form reported articles are signed by individual reporters or by the DMD Awareness Editorial collective, with sources linked.
What this site is not
- A diagnostic tool.
- A clinic, a hospital, or a treatment provider.
- A fundraising platform.
- An official source for any regulator or patient organization.
Corrections
If you spot an inaccuracy, an outdated claim, or a missing source, please tell us. Substantive corrections are noted in the post.
Trusted external resources
- Muscular Dystrophy Association (MDA)
- Parent Project Muscular Dystrophy
- Duchenne UK
- NIH MedlinePlus Genetics
- World Duchenne Organization
Disclaimer: This site provides informational content only and does not constitute medical advice, diagnosis, or treatment. Always consult qualified healthcare professionals for clinical decisions.