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Daily Archives: December 18, 2019

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DISORDER: The Rare Disease Film Festival — When Art Becomes Heart 

DISORDER: The Rare Disease Film Festival — When Art Becomes Heart 

  • Post author:Jean Martell
  • Post published:December 18, 2019
  • Post category:Cystic Fibrosis/Polycythemia vera/Rare Disease

The holiday season and end of the year/decade is upon us! As schedules slow down and we begin to reflect, I too began to take stock of the experiences that…

Continue Reading DISORDER: The Rare Disease Film Festival — When Art Becomes Heart 
The Importance of Awareness for Infantile Spasms
source: pixabay.com

The Importance of Awareness for Infantile Spasms

  • Post author:Kendall Mason
  • Post published:December 18, 2019
  • Post category:Infantile Spasms

  Parents are often worried about the health of their children; they do not want anything bad happening to their kids. They constantly look out for signs and symptoms of…

Continue Reading The Importance of Awareness for Infantile Spasms
Meet Palmoplantar Pustulosis, a Recently Confirmed Rare Disease
source: pixabay.com

Meet Palmoplantar Pustulosis, a Recently Confirmed Rare Disease

  • Post author:James Moore
  • Post published:December 18, 2019
  • Post category:Psoriatic Arthritis/Rare Disease

According to a story from Medical Xpress, a recent study has confirmed the status of palmoplantar pustolosis as a rare, orphan disease. A recent study of patients with the disease…

Continue Reading Meet Palmoplantar Pustulosis, a Recently Confirmed Rare Disease
Zanubrutinib Versus Ibrutinib: Which is Better for WM?
source: pixabay.com

Zanubrutinib Versus Ibrutinib: Which is Better for WM?

  • Post author:James Moore
  • Post published:December 18, 2019
  • Post category:Chronic Lymphocytic Leukemia/Waldenstrom Macroglobulinemia

According to a story from crweworld.com, the biopharmaceutical company BeiGene, Ltd. recently released the results of a phase 3 clinical trial. The goal of this trial was the comparison of…

Continue Reading Zanubrutinib Versus Ibrutinib: Which is Better for WM?
New PH1 Treatment Clears Phase 3 Study
source: pixabay.com

New PH1 Treatment Clears Phase 3 Study

  • Post author:Jean Martell
  • Post published:December 18, 2019
  • Post category:Primary Hyperoxaluria Type 1

Big development for those in the primary hyperoxaluria type 1 (PH1) community! Alnylam Pharmaceuticals just announced that its Phase 3 study of lumasiran, an investigational therapy for the treatment of primary…

Continue Reading New PH1 Treatment Clears Phase 3 Study
Christmas in the Hospital: Gareth’s Story
Source: Pixabay

Christmas in the Hospital: Gareth’s Story

  • Post author:Kendall Mason
  • Post published:December 18, 2019
  • Post category:Anaplastic large cell lymphoma/Graft versus Host Disease

  Gareth Crabb is a thoughtful and caring six-year-old boy from Swansea, U.K. He is spending his second Christmas in the hospital this year, as he has anaplastic large cell…

Continue Reading Christmas in the Hospital: Gareth’s Story
European Medical Agency Clears Amyloidosis Drug
source: pixabay.com

European Medical Agency Clears Amyloidosis Drug

  • Post author:Jean Martell
  • Post published:December 18, 2019
  • Post category:Amyloidosis

A big step forward for those with amyloidosis! The European Medicines Agency (EMA) granted Pfizer a positive recommendation for the approval of its treatment for amyloidosis, a rare disorder that…

Continue Reading European Medical Agency Clears Amyloidosis Drug
First Patient Dosed in Phase 2 Fanconi Anemia Clinical Trial
source: pixabay.com

First Patient Dosed in Phase 2 Fanconi Anemia Clinical Trial

  • Post author:James Moore
  • Post published:December 18, 2019
  • Post category:Fanconi Anemia/Neutropenia/Thrombocytopenia

According to a story from BioPortfolio, the drug developer Rocket Pharmaceuticals recently announced that the first patient has been dosed in the company's phase 2 clinical trial. This study is…

Continue Reading First Patient Dosed in Phase 2 Fanconi Anemia Clinical Trial

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