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Daily Archives: October 26, 2021

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RARESummit21: Rare Equity
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RARESummit21: Rare Equity

  • Post author:James Moore
  • Post published:October 26, 2021
  • Post category:Alstrom syndrome/Focal segmental glomerulosclerosis/Rare Disease/Xeroderma Pigmentosum

On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…

Continue Reading RARESummit21: Rare Equity
Takeda and Immusoft To Work Together to Develop Treatments for Neurometabolic Disorders

Takeda and Immusoft To Work Together to Develop Treatments for Neurometabolic Disorders

  • Post author:Kendall Mason
  • Post published:October 26, 2021
  • Post category:Rare Disease

Collaboration can be extremely important when it comes to developing treatments, especially for rare disorders. Sharing information, technology, and expertise can lead to therapies that otherwise might not have seen…

Continue Reading Takeda and Immusoft To Work Together to Develop Treatments for Neurometabolic Disorders
First Cohort Dosed in 5-MeO-DMT Trial for Treatment-Resistant Depression
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First Cohort Dosed in 5-MeO-DMT Trial for Treatment-Resistant Depression

  • Post author:Jessica Lynn
  • Post published:October 26, 2021
  • Post category:Mood Disorder/Mood Disorders

According to a recent news release, the first cohort - consisting of healthy volunteers - was dosed in a Phase 1 clinical trial evaluating an intranasal formulation of 5-MeO-DMT. Ultimately,…

Continue Reading First Cohort Dosed in 5-MeO-DMT Trial for Treatment-Resistant Depression
Besremi for Polycythemia Vera Approved in Korea
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Besremi for Polycythemia Vera Approved in Korea

  • Post author:Jessica Lynn
  • Post published:October 26, 2021
  • Post category:Polycythemia vera

When drug developers receive marketing approval in different countries, they expand medication access and allow patients across the globe to have better treatment. According to Korea Biomedical Review, Korea recently…

Continue Reading Besremi for Polycythemia Vera Approved in Korea
The Lessons I Learned From a Twin Anemia Polycythemia Sequence Diagnosis
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The Lessons I Learned From a Twin Anemia Polycythemia Sequence Diagnosis

  • Post author:Stephanie Ernst
  • Post published:October 26, 2021
  • Post category:Twin anemia polycythemia sequence/Twin-to-twin transfusion syndrome

A rare disease diagnosis changes your life.  As I look back on eight years of twin anemia polycythemia sequence and its impact on my girls, I also have to reflect…

Continue Reading The Lessons I Learned From a Twin Anemia Polycythemia Sequence Diagnosis
Managing Sickle Cell Disease Includes Addressing Quality of Life for Patients
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Managing Sickle Cell Disease Includes Addressing Quality of Life for Patients

  • Post author:Trudy Horsting
  • Post published:October 26, 2021
  • Post category:Sickle Cell Disease

Three doctors recently got together to discuss how they manage care for their sickle cell disease (SCD) patients. As a part of this conversation, they discussed how they combat systemic…

Continue Reading Managing Sickle Cell Disease Includes Addressing Quality of Life for Patients
Study: Understanding the Outcomes of NAFLD and NASH
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Study: Understanding the Outcomes of NAFLD and NASH

  • Post author:Kendall Mason
  • Post published:October 26, 2021
  • Post category:Nonalcoholic fatty liver disease/Nonalcoholic steatohepatitis

Currently, there are no FDA-approved treatments for nonalcoholic fatty liver disease (NAFLD) or its more advanced version: nonalcoholic steatohepatitis (NASH). This is partly due to the lack of understanding surrounding…

Continue Reading Study: Understanding the Outcomes of NAFLD and NASH

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