29 Feb 2024 Wall Street Journal Article by Judy Stecker February 29, 2024 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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 Emily Armstrong 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
10 Jun 2023 Expert Insights on Gene Therapy for International Batten Awareness Day June 10, 2023 BeyondBatten Research, News Neuronal ceroid lipofuscinosis (NCL) is a group of 13 rare inherited lysosomal disorders affecting the ne...Read More