Man With Duchenne Muscular Dystrophy Celebrates 50th Birthday After Grim Prognosis as a Child
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Man With Duchenne Muscular Dystrophy Celebrates 50th Birthday After Grim Prognosis as a Child

  Andrew Taylor celebrated his 50th birthday this year. This is a big year for anyone, but especially for Taylor, who was told he would not make it to the…

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Genome Sequencing Offers Promise for Children with Rare Developmental Delays and Other Genetic Rare Diseases
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Genome Sequencing Offers Promise for Children with Rare Developmental Delays and Other Genetic Rare Diseases

  For many families, when their child is born with developmental delays, there may be weeks, months, or even years that go by without a diagnosis. During this time, parents…

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A Real-Life Dallas Buyers Club? Cutting Long Lines and Buying Prescription Drugs Online
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A Real-Life Dallas Buyers Club? Cutting Long Lines and Buying Prescription Drugs Online

In the movie "Dallas Buyers Club" the main character, Ron Woodroof, contracts HIV/AIDs and starts getting drugs from an organization that imports medicine from Mexico. Similarly, many London patients are…

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New Study in Journal of Hepatology: Can Breastfeeding Your Baby Lower Your Risk of Nonalcoholic Fatty Liver Disease Later in Life?
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New Study in Journal of Hepatology: Can Breastfeeding Your Baby Lower Your Risk of Nonalcoholic Fatty Liver Disease Later in Life?

  A new published research study shows that women who breastfeed at least one child for six months or more are at a lower risk of having nonalcoholic fatty liver…

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Families Hope That Provinces in Canada Will Cover Expensive Therapies for Rare Diseases
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Families Hope That Provinces in Canada Will Cover Expensive Therapies for Rare Diseases

British Columbia faces excruciating decisions about how and whether to cover drug treatment for rare diseases. One particular drug is Spinraza.  It is a drug that is a part of…

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Misha Walker Advocates For Arthrogryposis Patients One State at a Time
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Misha Walker Advocates For Arthrogryposis Patients One State at a Time

  Misha Walker and her husband Mike have spent the summer in England, meeting with families who have children with a rare condition called arthrogryposis multiplex congenita (AMC). In the…

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Treatment for Childhood and Spinal Cord Cancer Linked to Lower Levels of Independence for Survivors
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Treatment for Childhood and Spinal Cord Cancer Linked to Lower Levels of Independence for Survivors

  The survival rates for infants and children with brain and spinal cord cancer has improved significantly over the past decades. However, a study published online in early August of…

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