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Daily Archives: May 2, 2020

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The COVID-19 Pandemic has Impacted Rare Disease Research Around the World
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The COVID-19 Pandemic has Impacted Rare Disease Research Around the World

  • Post author:James Moore
  • Post published:May 2, 2020
  • Post category:COVID-19/Rare Disease

According to a story from Buzzfeed News, the ongoing coronavirus/COVID-19 pandemic has put the brakes on critical rare disease research all over the globe, ranging from early, highly experimental studies…

Continue Reading The COVID-19 Pandemic has Impacted Rare Disease Research Around the World
CS1 to Treat Pulmonary Arterial Hypertension Granted Orphan Drug Status
source: pixabay.com

CS1 to Treat Pulmonary Arterial Hypertension Granted Orphan Drug Status

  • Post author:Jessica Lynn
  • Post published:May 2, 2020
  • Post category:pulmonary arterial hypertension/Rare Disease

The FDA recently granted Orphan Drug status to CS1, a drug therapy from Cereno Scientific, according to Pulmonary Hypertension News. CS1 is designed to provide safe and effective treatment for…

Continue Reading CS1 to Treat Pulmonary Arterial Hypertension Granted Orphan Drug Status
Choroideremia Fundraising Efforts Continue Despite the Pandemic

Choroideremia Fundraising Efforts Continue Despite the Pandemic

  • Post author:Trudy Horsting
  • Post published:May 2, 2020
  • Post category:Choroideremia

Mark Cohen is a 28 year old lawyer who has a rare eye disease called choroideremia. Its genetic, and his grandpa, brother, and cousin were all diagnosed. He didn't receive…

Continue Reading Choroideremia Fundraising Efforts Continue Despite the Pandemic
Remdesivir is Emerging as The First Antiviral Drug to Improve COVID-19 Recovery Time

Remdesivir is Emerging as The First Antiviral Drug to Improve COVID-19 Recovery Time

  • Post author:Rose Duesterwald
  • Post published:May 2, 2020
  • Post category:COVID-19/Rare Disease

A recent study conducted by a government agency, NIAID, offered preliminary evidence of Remdesivir’s benefit to COVID-19 patients. The drug is heralded as the first antiviral drug to improve COVID-19…

Continue Reading Remdesivir is Emerging as The First Antiviral Drug to Improve COVID-19 Recovery Time
Maddie’s Story: Living with Wiedemann Steiner Syndrome

Maddie’s Story: Living with Wiedemann Steiner Syndrome

  • Post author:Kendall Mason
  • Post published:May 2, 2020
  • Post category:Rare Disease

Maddie Nordhoy has a smile that can light up the room. She constantly brings joy to those around her, especially her family. In fact, she is even the inspiration for…

Continue Reading Maddie’s Story: Living with Wiedemann Steiner Syndrome

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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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