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Daily Archives: August 10, 2017

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An Update on Markie DeVoe’s Choroideremia Story
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An Update on Markie DeVoe’s Choroideremia Story

  • Post author:Athena Lee
  • Post published:August 10, 2017
  • Post category:Choroideremia/Rare Disease

If you remember reading our story on 12-year-old Markie DeVoe and his choroideremia, we have an important update for you. If you haven't read the story yet, you can find…

Continue Reading An Update on Markie DeVoe’s Choroideremia Story
Progress Being Made to Determine the Cause of Cerebral Palsy
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Progress Being Made to Determine the Cause of Cerebral Palsy

  • Post author:Sarah Lau
  • Post published:August 10, 2017
  • Post category:Cerebral Palsy/Hemiplegia/Rare Disease

A new study pinpoints faulty genes as another potential cause behind hemiplegic cerebral palsy. Until now, there was an insufficient amount of information to verify that genetics was part of…

Continue Reading Progress Being Made to Determine the Cause of Cerebral Palsy
High Hopes for This Gastroparesis Treatment
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High Hopes for This Gastroparesis Treatment

  • Post author:Athena Lee
  • Post published:August 10, 2017
  • Post category:Gastroparesis/Rare Disease

Theravance Biopharma recently proudly announced the results of a successful Phase 2b trial for their gastroparesis treatment, Velusetrag. The results showed that this treatment safely and effectively improved symptoms and normalized…

Continue Reading High Hopes for This Gastroparesis Treatment
Revolutionary CF Treatment Already Approved for Another Disease
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Revolutionary CF Treatment Already Approved for Another Disease

  • Post author:Al Pendleton
  • Post published:August 10, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Most things have multiple functions. The tire iron you use to jack up the car when changing a flat tire? It can be used as a self-defense weapon if an…

Continue Reading Revolutionary CF Treatment Already Approved for Another Disease
Siblings: The Unsung Heroes of Rare Disease Families
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Siblings: The Unsung Heroes of Rare Disease Families

  • Post author:Patient Worthy Contributor
  • Post published:August 10, 2017
  • Post category:Mucolipidosis Type III/Rare Disease

If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything…

Continue Reading Siblings: The Unsung Heroes of Rare Disease Families
Phase III Study for PKAN Treatment Underway
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Phase III Study for PKAN Treatment Underway

  • Post author:Athena Lee
  • Post published:August 10, 2017
  • Post category:Pantothenate Kinase-associated Neurodegeneration/Rare Disease

A biopharmaceutical company based in California called Retrophin recently announced that the first patient has been administered treatment in their phase III study in to test RE-024 (fosmetpantotenate) as a…

Continue Reading Phase III Study for PKAN Treatment Underway
Metabolic Disease Niemann-Pick May Have a New Map to Treatment Soon
[Source: pixabay.com]

Metabolic Disease Niemann-Pick May Have a New Map to Treatment Soon

  • Post author:Al Pendleton
  • Post published:August 10, 2017
  • Post category:Niemann-Pick Disease

Making scientific discoveries must be a lot like trying to map a coastline in the dark. There’s a lot of bumping into things and getting your feet wet in the…

Continue Reading Metabolic Disease Niemann-Pick May Have a New Map to Treatment Soon
Does a Possible Multiple Sclerosis Treatment Lie in Gut Bacteria?
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Does a Possible Multiple Sclerosis Treatment Lie in Gut Bacteria?

  • Post author:Athena Lee
  • Post published:August 10, 2017
  • Post category:Multiple Sclerosis/Rare Disease/Timely

Multiple Sclerosis is a disease of the brain and spinal cord. In patients with MS, their immune system attacks the protective myelin sheath that usually covers nerve fibers. These nerve…

Continue Reading Does a Possible Multiple Sclerosis Treatment Lie in Gut Bacteria?
Runner with Knee Injury Finishes Marathon to Awareness for Alkaptonuria
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Runner with Knee Injury Finishes Marathon to Awareness for Alkaptonuria

  • Post author:Minden Cantrell
  • Post published:August 10, 2017
  • Post category:Alkaptonuria/Rare Disease

You've got to be dedicated to train for a marathon. When Brit Joe England signed on to raise pounds for the Alkaptonuria (AKU) Society, he was optimistic about finishing the…

Continue Reading Runner with Knee Injury Finishes Marathon to Awareness for Alkaptonuria

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Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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