Article
Storytelling, Awareness, and the Race Against Time in Duchenne Muscular Dystrophy
A conversation with advocate Thomas Bartlett on why storytelling and public awareness, as much as science, drive funding, policy, and access in Duchenne.
Tag
#access
All articles and blog posts tagged #access.
Articles
Article
The Duchenne Lottery: Why Where a Child Lives May Now Matter More Than Ever
ELEVIDYS, the first Duchenne gene therapy, is approved in the US and Japan but rejected in Europe, leaving a child's access increasingly shaped by geography.
Article
The Same Disease, Different Countries: What Duchenne Parents in America and Georgia Reveal About Access, Hope, and Time
A reported comparison of how Duchenne families in the United States and Georgia experience access, advocacy, and the urgency of time.
Article
When Time Is Stealing Your Child: A Journalist's First Encounter With Duchenne
A journalist's first-person account of interviewing parents of children with Duchenne muscular dystrophy in Georgia, and what the conversation revealed.
Article
Duchenne, Drug Approval, and Public Policy: Why Georgian Families Are Demanding Action
How regulators, payers, and politics meet in the Duchenne treatment access dispute in Georgia, and what it says about rare disease policy.
Article
Children Waiting While Time Runs Out: The Human Cost of Duchenne in Georgia
Inside the Duchenne movement in Georgia: families, children, daily life, and what it costs to wait.
Article
Two Mothers, Two Realities
A reported piece on Duchenne Muscular Dystrophy, access to treatment, and the role information plays in deciding who receives care in time.
Blog
Blog
Finding and Choosing a Duchenne Care Center
Expert, multidisciplinary care improves outcomes in Duchenne. How to find a specialist center, what good care looks like, and when to seek a second opinion.
Blog
Insurance Appeals for Duchenne Families
Insurance appeals in DMD: when denials happen, how to structure the appeal letter, what evidence helps, and how patient organizations support families.
Blog
Telemedicine and Remote Care in Duchenne Muscular Dystrophy
Telemedicine in DMD: when virtual visits work, what they cannot replace, and how families can prepare to get the most from a remote appointment.
Blog
Working With DMD Patient Organizations
Patient organizations in DMD: PPMD, MDA, CureDuchenne, Jett Foundation, Duchenne UK. What they do, how families use them, and how to get involved.
Blog
Financial Planning and Insurance for Duchenne Families
Practical guidance on insurance, disability benefits, copay assistance, equipment funding, and long-term financial planning for DMD families.
Blog
DMD Treatment Access by Country: Why It Varies
Dmd treatment access by country varies through regulators, payers, health technology assessment, pricing, and local budgets.
Blog
Crossing Borders for Duchenne Treatment
Some families relocate or travel abroad for Duchenne treatment. The decision involves access, evidence, logistics, finances, and family.
Blog
Health Technology Assessment in Rare Disease
Health technology assessment shapes which rare disease therapies are funded, and how. A primer for families and advocates.
Blog
DMD Treatment Cost: Why Prices Are So High
Understand dmd treatment cost factors, including rare disease economics, manufacturing, evidence uncertainty, and payer decisions.