Cure Duchenne & The Duchenne Therapy Network Partner to Provide Training to Physical Therapists and Families

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Organizations partnering for the united goal of benefiting the community at large is a rare and wonderful thing. We’re thrilled to see that CureDuchenne and the Duchenne Therapy Network have joined forces to bring some of the most on-the-ground, necessary education for both physical therapists […]

Urge the FDA to Say YES to Accelerated Approval For Therapies For Duchenne.

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We urge the Food and Drug Administration (FDA) to use the Accelerated Approval pathway for approval and access to safe, effective therapies for Duchenne Muscular Dystrophy – the leading genetic killer of children that impacts 1 out of every 3,500 boys born in the United […]

Patient Tools: MDA’s List of Neuromuscular Disease Descriptions

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Below is a general overview of the characteristics of the neuromuscular diseases that affect children and teens. The disorders are grouped into six categories. For more detailed, up-to-date information about a specific disease, visit the Muscular Dystrophy Association’s disease information centers. The centers also include a […]

The Importance of Patient Initiated Research and Virtual BioTechs

Eileen O'Brien, Siren Interactive's Director of Search & Innovation.  Eileen has more than 16 years of digital healthcare marketing experience and is considered an opinion leader on social media

Sharonne N. Hayes, MD, from the Mayo Clinic, recently authored a blog, “The potential of patient initiated research in studying rare diseases,” where she described her experience with the rare disease SCAD–spontaneous coronary artery dissection. Katherine Leon had connected with other SCAD patients via the WomenHeart Inspire […]

Searching for a Cure For Duchenne – Patient Perspective Podcast #1

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In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by […]

CureDuchenne Hopes FDA Will Accomodate New Class Of Muscular Dystrophy Drugs Upon Proof Of Safety

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Seven years ago, we were a happy family with mom, dad and a beautiful 5 year old boy named Hawken.  We had noticed our son was unable to keep up in his first soccer team but we were assured by his pediatrician he was just […]