News

Horizon awards grants to 50 rare disease advocacy groups

Horizon Therapeutics has awarded grants to help support 50 organizations around the world that are focused on improving the lives of people with rare disorders such as Batten disease. The grants were awarded through the company’s #RAREis Global Advocate Grant initiative, which launched last year with the aim…

Theranexus shares update of Phase 1/2 trial of Batten-1

Treatment for up to six months with Batten-1 — Theranexus’ novel therapy for juvenile Batten disease — reduced nerve cell death and stabilized patients’ motor symptoms. That’s according to preliminary results from an ongoing Phase 1/2 clinical trial testing the experimental therapy. The results will be presented at the…

Advocates go global this June 9 for Batten Awareness Day

From sharing stories on social media — using hashtags like #BattenDay2023 and #BattenAdvocatesForACure — to wearing something orange this June 9 to participating in a 5K fundraising challenge, supporters globally are poised to mark this year’s International Batten Disease Awareness Day. Observed annually, the June 9 Awareness Day calls attention…