Batten Disease Support & Research Association

Stay Golden: St. Patrick's Day Party
2022-03-10 17:30 - 18:30 (America/New_York)
Registration is now open for BDSRA’s Stay Golden Saint Patrick’s Day Party taking place Thursday, March 10th at 5:30p EST! Join the BDSRA team for a jolly good party with crafts, games, and a festive book! Register by March 1st. to receive a St .Patrick’s Party Box! (Boxes for U.S Families only). You can register to receive a box or just attend the virtual party. We would be lucky to see you there! Register here: https://web.charityengine.net/StayGoldenParty

Rare Disease Week Debrief Party
2022-03-02 19:00 - 20:00
After a week of advocating for our Batten Community, join BDSRA for a live debrief with staff and others who participated during this week of advocacy. We cannot wait to hear all your stories and victories!
To Register Visit: https://web.charityengine.net/RDWParty

Quarterly Grief Chat
2022-02-22 19:00 - 20:00
BDSRA understands that each stage of this journey is different, and we are here for you. This is an opportunity for loved ones to gather, share and support one another. Please consider joining us at 7:00pm EST on February 22nd, 2022. Join the event with the zoom link that will be sent via email upon registration. Register here: https://web.charityengine.net/GriefChat_Feb2022/

Rare Disease Week on Capitol Hill
2022-02-22 - 2022-03-02
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Rare Disease Week

Ask-An-Expert: Research Edition
2022-02-21 17:00 - 18:00 | Zoom
Registration is now open! Join us for Ask-An-Expert: Research Edition on Monday, February 21st at 5p EST with Dr. David Pearce. Ask questions and learn about research updates important to our Batten Community during this LIVE Q&A. Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the link provided.

Ask-An-Expert: Clinical Edition
2022-01-18 18:00 - 19:00
Ask-An-Expert: Clinical Edition | January 18th | 6p EST
Learn about clinical updates and ask questions during this LIVE Q&A with Dr. Erika Augustine. Register here: https://web.charityengine.net/ClinicalEdition_Jan2022/
