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Daily Archives: August 18, 2022

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Four Young Patients Plus Popular Antibiotic Equals Lung Collapse

Four Young Patients Plus Popular Antibiotic Equals Lung Collapse

  • Post author:Rose Duesterwald
  • Post published:August 18, 2022
  • Post category:Rare Disease

Six years after receiving a lung transplant a young woman 21 years of age noticed an article in Reforestemos Patagonia © about another young woman who was waiting for a…

Continue Reading Four Young Patients Plus Popular Antibiotic Equals Lung Collapse
Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin
source: unsplash.com

Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin

  • Post author:Rose Duesterwald
  • Post published:August 18, 2022
  • Post category:Rare Disease

  Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…

Continue Reading Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin
ABX1100 for Pompe Disease Earns Orphan Drug Designation
Photo by Ben White on Unsplash: https://unsplash.com/photos/lVCHfXn3VME

ABX1100 for Pompe Disease Earns Orphan Drug Designation

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Pompe Disease

In the United States, Orphan Drug designation is a special status granted to drugs or biologics intending to treat, prevent, or diagnose a rare disease or condition. A "rare" condition…

Continue Reading ABX1100 for Pompe Disease Earns Orphan Drug Designation
Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)
Photo courtesy of Ankona "Mo" Das

Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Multiple Sclerosis

For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and…

Continue Reading Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)
First Patient Dosed in Nula-cel Trial for SCD
source: pixabay.com

First Patient Dosed in Nula-cel Trial for SCD

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Sickle Cell Disease

  For those living with sickle cell disease (SCD), treatment and management can sometimes be difficult. Currently, there is no cure for SCD. Patients may manage their condition using antibiotics,…

Continue Reading First Patient Dosed in Nula-cel Trial for SCD
Happy 2nd Birthday to TAPS Support!

Happy 2nd Birthday to TAPS Support!

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Twin anemia polycythemia sequence

Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…

Continue Reading Happy 2nd Birthday to TAPS Support!

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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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