WATCH: BDSRA’s Noah Siedman Speaks at NewYorkBIO Patient Engagement Summit
BDSRA Foundation Database Manager Noah Siedman spoke at the [...]
Important Dates For The Batten Disease Community
Hello Everyone, April showers bring May flowers, but here [...]
Batten Disease Q&A | 2024 Rare Disease Week Recap
Provide 1-2 main takeaways from this event. One of the [...]
2024 International Batten Disease Awareness Day T-Shirt Design Contest
Submit A Design Today! It Could Be Featured on [...]
RARE DISEASE WEEK | Advocate For The Batten Disease Community Today!
Send Emails to Your Congressional Reps in 3 Easy [...]
Ohio Rare Disease Advocacy Day Summary | Batten Disease
Batten Disease Support, Research, & Advocacy (BDSRA) Foundation represented the [...]
Batten Disease Advocacy in Action | Suzette James
Suzette James, a late-onset CLN2 Batten disease mother to Maya [...]
What if? The Importance of Newborn Screening Advocacy to the Fennell Family
When Claudia Fennell sits at the dinner table with her [...]
The story behind this year’s International Batten Disease Awareness Day T-shirt design
As BDSRA Foundation announced its winner of the International Batten [...]
Resolution signed declaring June 9th Batten Disease Awareness Day in NY
ALBANY, N.Y. – A resolution has been signed to declare [...]
