BDSRA 2019 Board Nominations
The BDSRA Board of Directors has several open seats for [...]
REGENXBIO Announces Pipeline Expansion with RGX-181 Gene Therapy for CLN2 Form of Batten Disease
The expansion of Batten Disease treatment options is crucial to [...]
Sibling Highlight: Award Winning Poet Shalini Rana
In April, Shalini Rana, sibling of Shiv Rana CLN6, won third [...]
From Bench to Bedside, Getting to an FDA Approval
It is an exciting time for Batten research! As new [...]
Batten Connect and Laps 4 Life
Margie’s trip to Manitoba started with the Batten Connect Information [...]
Family Conference Agenda
We are excited to share the tentative agenda for the [...]
February Funding Partners!
The often grey and cold winter month of February brings [...]
Volunteer Spotlight: Nationwide Insurance
BDSRA is grateful for a wonderful group of employees from [...]
Rare Disease Day Recap
BDSRA's community was very active during this year's Rare Disease [...]
2018 BDSRA Family Conference Registration is open!
Registration for the 2018 BDSRA Conference is now live! We [...]
