Ask-An-Expert: Research Edition
ZoomRegistration is now open! Join us for Ask-An-Expert: Research Edition [...]
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Rare Disease Week on Capitol Hill
Rare Disease Week on Capitol Hill brings together rare disease [...]
Quarterly Grief Chat
BDSRA understands that each stage of this journey is different, [...]
Rare Disease Week Debrief Party
After a week of advocating for our Batten Community, join [...]
Stay Golden: St. Patrick’s Day Party
Registration is now open for BDSRA's Stay Golden Saint Patrick's [...]
Newly Diagnosed Meet and Greet
A place for new families to meet one another, learn [...]
Ask-An-Expert Rare & Ready: Clearing Hurdles to Access Rare Disease Therapies
Join us to learn more about the Rare & Ready [...]
Support Group Leader Training
ZoomBDSRA wants to take a moment to thank you [...]
Ask-An-Expert: Courageous Parents Network Edition
Join us for Ask-An-Expert: Courageous Parents Network Edition on April [...]
Facebook: Equipment Exchange Swap Day
This is an opportunity for individuals and families to [...]
