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Daily Archives: June 21, 2022

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Justin Bieber’s Journey with Ramsay Hunt Syndrome

Justin Bieber’s Journey with Ramsay Hunt Syndrome

  • Post author:Alyssa Stevens
  • Post published:June 21, 2022
  • Post category:Ramsay Hunt syndrome

Popular Canadian singer Justin Bieber stunned the world when he announced he was diagnosed with Ramsay Hunt syndrome following his facial paralysis. Ramsay Hunt Syndrome Ramsay Hunt syndrome (herpes zoster…

Continue Reading Justin Bieber’s Journey with Ramsay Hunt Syndrome
Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)

Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)

  • Post author:Rose Duesterwald
  • Post published:June 21, 2022
  • Post category:Amyotrophic Lateral Sclerosis

Thanks to Amylyx Pharmaceuticals, Canada becomes the first country worldwide to have access to an ALS drug branded Albrioza (originally AMX0035). According to an article in Yahoo News, the drug…

Continue Reading Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)
Ilixadencel for GISTs Granted Orphan Drug Designation
https://unsplash.com/photos/tV-RX0beDp8

Ilixadencel for GISTs Granted Orphan Drug Designation

  • Post author:Jessica Lynn
  • Post published:June 21, 2022
  • Post category:Gastrointestinal Stromal Tumors

In the United States, the FDA grants Orphan Drug designation to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. Do you know what makes a…

Continue Reading Ilixadencel for GISTs Granted Orphan Drug Designation
Patient Story: Meghan O’Rourke Talks Chronic Illnesses in Her New Novel
Pexels / Pixabay

Patient Story: Meghan O’Rourke Talks Chronic Illnesses in Her New Novel

  • Post author:Alyssa Stevens
  • Post published:June 21, 2022
  • Post category:Rare Disease

Meghan Rourke saw the need for more open conversations about chronic illnesses, sparking her to write The Invisible Kingdom: Reimaging Chronic Illness. In an excerpt from her novel, she shares…

Continue Reading Patient Story: Meghan O’Rourke Talks Chronic Illnesses in Her New Novel
Study Update: AT-01 for Systemic Amyloidosis

Study Update: AT-01 for Systemic Amyloidosis

  • Post author:Kendall Mason
  • Post published:June 21, 2022
  • Post category:Amyloidosis

From June 11th until the 14th, the Society of Nuclear Medicine & Molecular Imaging (SNMMI) Annual Meeting was held in Vancouver, Canada. At this meeting, Attralus Inc. shared new data…

Continue Reading Study Update: AT-01 for Systemic Amyloidosis
Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights
cherylholt / Pixabay

Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights

  • Post author:Jessica Lynn
  • Post published:June 21, 2022
  • Post category:Spinal Muscular Atrophy

In clinical trials evaluating Zolgensma for children with spinal muscular atrophy (SMA), the maximum weight of participants was 18.7 pounds. However, parents with children weighing over that weight might be…

Continue Reading Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights
A New Study Finds That Gene Therapy May Prevent or Reverse Pitt-Hopkins Syndrome
source: shutterstock.com

A New Study Finds That Gene Therapy May Prevent or Reverse Pitt-Hopkins Syndrome

  • Post author:Rose Duesterwald
  • Post published:June 21, 2022
  • Post category:Pitt-Hopkins Syndrome

In normal development, genes are usually inherited in pairs - with one copy from the father and one inherited from the mother. When one copy of the TCF4 gene, which…

Continue Reading A New Study Finds That Gene Therapy May Prevent or Reverse Pitt-Hopkins Syndrome
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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