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Helen's Pink Sky Foundation to Feature on BWT Alpine Formula One Team's A525 to Raise Awareness of Batten Disease during the Formula 1 United States Grand Prix 2025
16 Oct 2025 18:39 GMT
… showcase the fight against Batten Disease to millions of … diagnosed with Late Infantile Batten Disease (CLN2). The rare … ensure no family faces Batten Disease alone.
"Every partnership … medical research to combat Batten Disease and to support those …
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AAV Manufacturing Partnership Supports Gene Therapy for CLN2 Batten Disease
04 Sep 2025 20:43 GMT
… neuronal ceroid lipofuscinosis 2 (CLN2) Batten disease, a rare and fatal pediatric … children and families facing CLN2 Batten disease, providing hope where today there … for the Treatment of CLN2 Batten Disease. Press Release. Sept. 3, 2025 …
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Andelyn and Tern partner for gene therapy to treat CLN2 Batten disease
04 Sep 2025 12:50 GMT
… , TTX-381, to treat CLN2 Batten disease in children.
This therapy is … for its ocular manifestations.
CLN2 Batten disease is caused by a deficiency … children and families facing CLN2 Batten disease, providing hope where today there …
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Andelyn Biosciences and Tern Therapeutics Partner for Late-Stage Process Performance Qualification (PPQ) Manufacturing of AAV Gene Therapy for the Treatment of CLN2 Batten Disease
03 Sep 2025 13:50 GMT
… loss in children with CLN2 Batten disease, an ultra-rare pediatric neuro … disease.
CLN2, a form of Batten disease caused by TPP1 protein deficiency … children and families facing CLN2 Batten disease, providing hope where today there …
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U.S. Batten disease experts who lobbied B.C. to reinstate drug in Charleigh Pollock case had relationships with drug company
13 Aug 2025 16:31 GMT
Almost all the U.S. research experts the B.C. government leaned on to make a decision to reinstate a $800,000-a-year drug treatment for a 10-year-girl have, or had, relationships with the pharmaceutical company that manufacturers the drug or foundations …
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Family fighting for cure after daughter's batten disease diagnosis
10 Aug 2025 15:55 GMT
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B.C. resumes funding for Langford girl with Batten disease
19 Jul 2025 01:18 GMT
… daughter’s medication for Batten disease, the province reversed … neurodegenerative disorder known as Batten disease.
The only treatment … limited effectiveness on her Batten disease.
But that decision … that no family with Batten disease goes through this again …
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B.C. restores rare drug funding for 10-year-old girl with Batten disease
18 Jul 2025 01:55 GMT
… letter I received today from Batten disease experts confirms there is … the use of Brineura for Batten Disease.” Story continues below advertisement
… U.S. Batten Disease Clinical Centers of Excellence and Batten Disease Clinical Research Consortium …
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Twins show progress in UNC Health's trial for Batten disease
17 Jul 2025 12:43 GMT
… specific mutation associated with juvenile Batten disease, or CLN3. Since then, … Amelia has started eating again.
Batten disease is a fatal pediatric neurodegenerative … Foundation funds research into juvenile Batten disease and supports affected families. In …
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B.C. premier once again giving Charleigh’s family hope after damning letter from Batten disease experts
18 Jul 2025 00:00 GMT