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Daily Archives: February 19, 2021

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New Presentation on Phase 1 Trial of OTX-TKI
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New Presentation on Phase 1 Trial of OTX-TKI

  • Post author:Kendall Mason
  • Post published:February 19, 2021
  • Post category:Wet macular degeneration

Ocular Therapeutix has announced that they will attend and present at the Angiogenesis, Exudations, and Degeneration 2021 Meeting, which is being held virtually due to the pandemic. They intend to…

Continue Reading New Presentation on Phase 1 Trial of OTX-TKI
SCD Gene Therapy Trials Stop After Patients Develop MDS, AML
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SCD Gene Therapy Trials Stop After Patients Develop MDS, AML

  • Post author:Jessica Lynn
  • Post published:February 19, 2021
  • Post category:Sickle Cell Disease

While gene therapy is a promising field, there are some associated risks: unwanted immune reactions, infections, or whether the therapy could lead to the development of other conditions, like cancer.…

Continue Reading SCD Gene Therapy Trials Stop After Patients Develop MDS, AML
A Call To Policymakers For Lower Out-of-Pocket Costs
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A Call To Policymakers For Lower Out-of-Pocket Costs

  • Post author:Rose Duesterwald
  • Post published:February 19, 2021
  • Post category:Rare Disease

  Policymakers Must Offer Solutions That Provide Patients with Lower Out-of-Pocket Costs For Critical Medicine In addition to coping with chronic illness, many patients are faced with the challenge of…

Continue Reading A Call To Policymakers For Lower Out-of-Pocket Costs
Portsmouth, VA Organizer Dies From Myositis Complications
source: pixabay.com

Portsmouth, VA Organizer Dies From Myositis Complications

  • Post author:James Moore
  • Post published:February 19, 2021
  • Post category:Myositis/Rare Disease

According to a story from wavy.com, Cherie Reenee Brown was a prominent political organizer and activist in the city of Portsmouth, VA. But on New Years Day 2021 she passed…

Continue Reading Portsmouth, VA Organizer Dies From Myositis Complications
Survey Shows Rare Disease Patients Have Worse Healthcare Experiences
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Survey Shows Rare Disease Patients Have Worse Healthcare Experiences

  • Post author:Kendall Mason
  • Post published:February 19, 2021
  • Post category:Rare Disease

A survey created by Eurodis, a European rare disease advocacy alliance, has shown that those living with a rare disease have a worse healthcare experience than people with a chronic…

Continue Reading Survey Shows Rare Disease Patients Have Worse Healthcare Experiences
NORD Announces their 2020 State Report Card on Rare Disease Policies
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NORD Announces their 2020 State Report Card on Rare Disease Policies

  • Post author:Trudy Horsting
  • Post published:February 19, 2021
  • Post category:Rare Disease

Every year for the past six years the National Organization for Rare Disorders (NORD) has published a State Report Card on the progress of rare disease policies in the states.…

Continue Reading NORD Announces their 2020 State Report Card on Rare Disease Policies
Rare Classroom: Carcinoid Syndrome
source: shutterstock

Rare Classroom: Carcinoid Syndrome

  • Post author:James Moore
  • Post published:February 19, 2021
  • Post category:Carcinoid Syndrome/Carcinoid tumor

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Carcinoid Syndrome
He Established A New Type of Autoimmune Disease and Won the Crafoord Prize
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He Established A New Type of Autoimmune Disease and Won the Crafoord Prize

  • Post author:Sunniva Bean
  • Post published:February 19, 2021
  • Post category:Rare Disease

As reported in a press release in PR Newswire; in Stockholm this week, Dan Kastner received the Crafoord Prize, one of the top achievements in science worldwide, after his work…

Continue Reading He Established A New Type of Autoimmune Disease and Won the Crafoord Prize
ADXGYNAE Identifies Endometrial Cancer Biomarkers in 3 Hours
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ADXGYNAE Identifies Endometrial Cancer Biomarkers in 3 Hours

  • Post author:Jessica Lynn
  • Post published:February 19, 2021
  • Post category:Endometrial cancer

Typically, the pathway to diagnosis for endometrial cancer can be long, uncomfortable, and invasive: transvaginal ultrasounds, biopsies. However, this may be about to change. In a recent press release, Arquer…

Continue Reading ADXGYNAE Identifies Endometrial Cancer Biomarkers in 3 Hours

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