Advocacy in Action: RARE Drug Development Symposium Summary
In his own words, BDSRA Foundation Database Manager Noah Siedman [...]
T-Shirt Design Contest Introduces Batten Disease To Local Community
Eight-year-old Kennedy Reed’s simple love for drawing and coloring has [...]
NOW OPEN: Batten Disease Awareness Day Fundraising
It's that time of year again! For this year's [...]
WATCH: BDSRA’s Noah Siedman Speaks at NewYorkBIO Patient Engagement Summit
BDSRA Foundation Database Manager Noah Siedman spoke at the [...]
Conference Registration is OPEN; The Design Contest Winner is…
Meet Us in St. Louis This July! Registration for [...]
MARCH NEWSLETTER | Read The Illuminator
March 2024 [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | March Illuminator Edition
Another month has passed, which means it's time for research [...]
Vote For Your Favorite International Batten Disease Awareness Day T-Shirt Design!
We received 27 designs and narrowed it down to three [...]
Important Dates For The Batten Disease Community
Hello Everyone, April showers bring May flowers, but here [...]
Characterizing Sleep in Batten Disease Study
Research Study Announcement Study Title: Characterizing Sleep in Batten Disease [...]
