SIBs Warm-Up
ZoomBefore you reunite with your fellow SIBs in person at [...]
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Annual Family Conference in St. Louis
Click here to visit the main conference page on our [...]
2nd Annual Dog Days of Summer Virtual Party
ZoomThe summer days are hot, but hanging out with your [...]
Boo Bash 2024
ZoomCLICK HERE TO REGISTER Who's ready for a scary good [...]
2024 Annual Appeal
Beginning on November 4, the BDSRA Foundation will open its [...]
Fam Funds Informational Zoom Meeting
ZoomFAM FUNDS IS BACK! Batten families now have the opportunity [...]
Board of Directors Quarterly Meeting
ZoomBDSRA’s Board of Directors will have its quarterly meeting in person [...]
Valentine’s Day Party
ZoomLove is in the air, and so is fun! The [...]
Rare Disease Week on Capitol Hill
UPDATE: FDA-NIH Rare Disease Day has been postponed. Click here [...]
SIBs Mid-Season Social
ZoomThe SIBs Mid-Season Social on Saturday, March 1, 2025, is open [...]
