Beyond Batten Disease Foundation

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      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
14 May 2025

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
Alejandra Tijerina
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – Mai 13, 2025 – 6.00 pm CET –Theranexus, a biopharmaceutica...
Read More
30 Apr 2025

Family Research Calls – May 13 & 15

April 30, 2025
Alejandra Tijerina
News
Dear BBDF Family Partners, Please join us on our next two family research calls. You will need to regi...
Read More
10 Apr 2025

Batten Disease Global Research Initiative Announces Inaugural Grant Recipients

April 10, 2025
Alejandra Tijerina
Research
March 18, 2025 Batten Disease Global Research Initiative Announces Inaugural Grant Recipients The B...
Read More
3 Dec 2024

Batten-1 May Preserve Vision with Juvenile Batten Disease

December 3, 2024
Alejandra Tijerina
News
Findings in Phase 1/2 clinical trial, access program also support miglustat's safety. by Margarida Maia,...
Read More
20 Nov 2024

Update on the Theranexus’ Batten-1 project in CLN3 Batten’s disease

November 20, 2024
Alejandra Tijerina
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – November 19, 2024 – 6 PM CET – Theranexus, a biopharmaceuti...
Read More
14 Aug 2024

NORD Batten Disease Patient Assistance Program Reminder

August 14, 2024
Alejandra Tijerina
News
Reminder that NORD's Batten Disease Premium & Copay Patient Assistance Program is open and accepting...
Read More
23 Jul 2024

We Need Your Help Re: Off-Label Miglustat Use

July 23, 2024
Alejandra Tijerina
Research
As we have previously reported, the Phase III trial for Batten-1 is experiencing some unanticipated delay...
Read More
10 Jul 2024

Batten Disease Research Priorities (Phase 2) – YOUR HELP REQUESTED

July 10, 2024
Alejandra Tijerina
News
Dear Batten community, Phase 2 of the Batten disease research priority-setting process is underway and...
Read More
7 Jun 2024

Theranexus and BBDF Confirm Positive 18-Month Results for Batten-1 in Phase I/II Trial Based on Neuronal Death Biomarker Values

June 7, 2024
Alejandra Tijerina
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – 6 June 2024 – 7:30am CT – Theranexus, a biopharmaceutical c...
Read More
22 May 2024

Batten Disease Research Priorities – YOUR HELP REQUESTED

May 22, 2024
Alejandra Tijerina
Research
Dear Batten community, The BDSRA Foundation and Kennedy Krieger Institute are conducting an important...
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

  • 512.275.2600
  • 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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