Beyond Batten Disease Foundation

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      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

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      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

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Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
17 Apr 2024

Theranexus Announces Positive Data on Efficacy and Safety in the Phase I/II Trial of Batten-1

April 17, 2024
Alejandra Tijerina
Research, News, Press Releases
Theranexus Announces Positive Data on Efficacy and Safety in the Phase I/II Trial of Batten-1 Stabilizat...
Read More
29 Feb 2024

Wall Street Journal Article by Judy Stecker

February 29, 2024
Alejandra Tijerina
Family Stories
Pediatric rare disease drug development relies on the commitment, motivation, and tenacity of the parents...
Read More
12 Feb 2024

Amicus Discontinuing Their CLN6 program

February 12, 2024
Alejandra Tijerina
News
Like many in our Batten community, we are disappointed to hear that Amicus have chosen to discontinue the...
Read More
1 Feb 2024

BBDF Supporting the National Institutes of Health CLN3 Natural History Study

February 1, 2024
Alejandra Tijerina
Research
BBDF is proud to support the CLN3 Natural History Study at the National Institutes of Health (NIH). A sum...
Read More
10 Jan 2024

National Institutes of Health Seek Individuals to Participate in a Research Study

January 10, 2024
Alejandra Tijerina
Research
Researchers at the National Institutes of Health (NIH), in Bethesda, Maryland, seek individuals with CLN3...
Read More
30 Sep 2023

Highly Promising 12-month results in the Phase I/II trial of Batten-1

September 30, 2023
Alejandra Tijerina
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – 29 September 2023 – 7.30am – CET – Theranexus, a biopharmac...
Read More
15 Aug 2023

Rare Sibling Stories Looking for Stories!

August 15, 2023
Alejandra Tijerina
News
Rare Sibling Stories is looking for siblings to highlight on their platforms! They would love to feature...
Read More
17 Jul 2023

NORD’s Batten Disease Patient Assistance Program

July 17, 2023
Alejandra Tijerina
News
Having a rare disease is difficult. Adding in the complex care required to treat or manage that disease a...
Read More
17 Jul 2023

BBDF Grants $60,000 Over 3-Years to Support Ineka Whiteman, Ph.D., Head of Research and Medical Affairs

July 17, 2023
Alejandra Tijerina
Research
BBDF grants $60,000 over 3-years to the BDSRA Foundation to support Ineka Whiteman, Ph.D. to serve as the...
Read More
14 Jun 2023

Encouraging preliminary 6-month results in the Phase I/II trial of Batten-1 in Batten disease (CLN3)

June 14, 2023
BeyondBatten
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – 14 June 2023 – 7.30am CEST – Theranexus, a biopharmaceutica...
Read More
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Recent Posts

  • Theranexus and Beyond Batten Disease Foundation Announce Strong Positive Real-World Data Supporting Batten-1 Efficacy for the Treatment of Batten Disease
  • Family Research Calls – May 13 & 15
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients
  • Batten-1 May Preserve Vision with Juvenile Batten Disease
  • Update on the Theranexus’ Batten-1 project in CLN3 Batten’s disease

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Contact Us

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  • info@beyondbatten.org
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

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What’s New?

  • Theranexus and Beyond Batten Disease Foundation Announce Strong Positive Real-World Data Supporting Batten-1 Efficacy for the Treatment of Batten Disease May 14, 2025
  • Family Research Calls – May 13 & 15 April 30, 2025
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients April 10, 2025

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