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Daily Archives: April 13, 2021

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Machine Learning Could Improve FXS Diagnostic Process
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Machine Learning Could Improve FXS Diagnostic Process

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Fragile X Syndrome

As many patients within the rare disease community know, the diagnostic odyssey can be long and arduous. But what if burgeoning technologies, like artificial intelligence (AI) and its branches (machine…

Continue Reading Machine Learning Could Improve FXS Diagnostic Process
Patient Story: Dad Sings to Son with Krabbe Disease
Pexels / Pixabay

Patient Story: Dad Sings to Son with Krabbe Disease

  • Post author:Kendall Mason
  • Post published:April 13, 2021
  • Post category:Krabbe Disease

One of six-year-old Jackson Garwood's favorite things to do is listen to his father sing. Some of his favorite numbers include 'Talk Tonight' by Oasis and Aqualung's 'Brighter Than The…

Continue Reading Patient Story: Dad Sings to Son with Krabbe Disease
Study Associates Alpha-synuclein with Melanoma and Parkinson’s
geralt / Pixabay

Study Associates Alpha-synuclein with Melanoma and Parkinson’s

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Melanoma/Parkinson's Disease

From April 5 - 30, the American Chemical Society meets to hold ACS Spring 2021, where chemistry professionals meet to discuss new research and knowledge in their field. During the…

Continue Reading Study Associates Alpha-synuclein with Melanoma and Parkinson’s
Pamrevlumab for DMD Granted Fast Track Designation
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Pamrevlumab for DMD Granted Fast Track Designation

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Duchenne Muscular Dystrophy/Muscular Dystrophy

In a recent news release, biopharmaceutical company FibroGen, Inc. ("FibroGen") shared that its therapeutic candidate, pamrevlumab, received Fast Track designation from the FDA. The anti-CTGF antibody is designed to treat…

Continue Reading Pamrevlumab for DMD Granted Fast Track Designation
FDA and EMA Explore Blood Clot Potential in J&J COVID-19 Vaccine
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FDA and EMA Explore Blood Clot Potential in J&J COVID-19 Vaccine

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:COVID-19/Thrombocytopenia

Over one year ago, the news became saturated with information on COVID-19, a novel coronavirus pandemic that has since swept the globe. At the time of this article, there are…

Continue Reading FDA and EMA Explore Blood Clot Potential in J&J COVID-19 Vaccine

DSMB Suggests ANAVEX 2-73 Clinical Trials for Rett Syndrome Safe to Continue

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Rett Syndrome

During clinical trials, Independent Data Safety Monitoring Boards (DSMBs) sometimes assess trial safety, trial integrity, and how well the trials are upholding patient needs. According to Business Insider, the DSMB…

Continue Reading DSMB Suggests ANAVEX 2-73 Clinical Trials for Rett Syndrome Safe to Continue
Podcast Overview: Discussing APS with Amgen’s Karen Breen
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Podcast Overview: Discussing APS with Amgen’s Karen Breen

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Antiphospholipid Syndrome

Every autumn, VTE Dublin is held to discuss treatment, care, and research centered around venous thromboembolism (VTE). The conference consists of clinicians and experts who are passionate about improving the…

Continue Reading Podcast Overview: Discussing APS with Amgen’s Karen Breen
Treatment Impact Differs Based on Christianson Syndrome Mutation
qimono / Pixabay

Treatment Impact Differs Based on Christianson Syndrome Mutation

  • Post author:Jessica Lynn
  • Post published:April 13, 2021
  • Post category:Rare Disease

With genetic disorders, there is always a big question: do specific gene mutations respond differently to treatment? How can treatment be targeted to best suit the needs of patients? According…

Continue Reading Treatment Impact Differs Based on Christianson Syndrome Mutation
Krabbe Disease is Taking Over Emmett’s Life But His Parents are Fighting to Save Other Children

Krabbe Disease is Taking Over Emmett’s Life But His Parents are Fighting to Save Other Children

  • Post author:Rose Duesterwald
  • Post published:April 13, 2021
  • Post category:Krabbe Disease

CNN Newsource ran a special report about five-year-old Emmett Monaco of Beaverton, Oregon who is fighting to stay alive, but his body is slowly failing him. Emmett was diagnosed with…

Continue Reading Krabbe Disease is Taking Over Emmett’s Life But His Parents are Fighting to Save Other Children

Featured


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Rethinking What It Means to Live With Acromegaly


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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