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Giant axonal neuropathy

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Boy with Giant Axonal Neuropathy (GAN) Celebrates Curly Hair Day at School
Photo by Tamas Pap on Unsplash

Boy with Giant Axonal Neuropathy (GAN) Celebrates Curly Hair Day at School

  • Post author:Jessica Lynn
  • Post published:May 15, 2024
  • Post category:Giant axonal neuropathy

May 2 is Curly Hair Day—a day to celebrate the beauty of waves, coils, and curls. But for one fifth-grader in Canada, Curly Hair Day stands as a way for…

Continue Reading Boy with Giant Axonal Neuropathy (GAN) Celebrates Curly Hair Day at School
TSHA-120 Earns Orphan Drug Designation in Europe for Giant Axonal Neuropathy
source: pixabay.com

TSHA-120 Earns Orphan Drug Designation in Europe for Giant Axonal Neuropathy

  • Post author:Jessica Lynn
  • Post published:May 11, 2022
  • Post category:Giant axonal neuropathy

In Europe, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare, life-threatening, or chronically debilitating conditions. For the European Union (EU), a “rare”…

Continue Reading TSHA-120 Earns Orphan Drug Designation in Europe for Giant Axonal Neuropathy
Positive Data Available on TSHA-120 for Giant Axonal Neuropathy
source: pixabay.com

Positive Data Available on TSHA-120 for Giant Axonal Neuropathy

  • Post author:Jessica Lynn
  • Post published:February 3, 2022
  • Post category:Giant axonal neuropathy

In a late January 2022 news release, gene therapy company Taysha Gene Therapies, Inc. ("Taysha") shared that trial data was now available on TSHA-120. The therapy, designed to treat giant…

Continue Reading Positive Data Available on TSHA-120 for Giant Axonal Neuropathy
Tickets are on Sale Now for Rare Disease Film Festival in Boston

Tickets are on Sale Now for Rare Disease Film Festival in Boston

  • Post author:Jean Martell
  • Post published:August 8, 2019
  • Post category:Angelman Syndrome/Batten Disease/Giant axonal neuropathy/PACS1 Syndrome/Sanfilippo Syndrome

Are we ready for our close-up? The second annual Selections from DISORDER: The Rare Disease Film Festival at Biotech Week Boston will be held at the Takeda Auditorium in Cambridge,…

Continue Reading Tickets are on Sale Now for Rare Disease Film Festival in Boston
Gene Replacement Research and the Hope to Cure Rare Disease
geralt / Pixabay

Gene Replacement Research and the Hope to Cure Rare Disease

  • Post author:Ellen Johnson
  • Post published:July 1, 2019
  • Post category:Batten Disease/Giant axonal neuropathy

Researchers are studying gene replacement therapy in rare diseases at UT Southwestern Medical Center. Many rare diseases are caused from a defect in a single gene, so replacing the defective…

Continue Reading Gene Replacement Research and the Hope to Cure Rare Disease

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