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Social MediaTom Evans2026-01-20T15:06:46-05:00

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SUPPORT + RESEARCH + ADVOCACY. We are #BattenAdvocatesForACure. Click the link below for news, events, and how to donate.

Everyone in the Batten disease community has had t

Let’s share some facts about Rare Diseases! SHARE

Today and every day, we recognize, stand with, and

BDSRA Board Secretary, Gretchen Fieschko, had the

TODAY'S THE DAY! 🐼❤️ ✅ Order @officialpandaexpres

BDSRA Board Vice Chair and Batten mom Suzette Jame

🚨 CALLING FOR VOLUNTEERS 🚨 Joining us in Chicago

SHOP BY MARCH 4: @papercloudsapparel will donate 5

Planning meals for this Rare Disease Week? Enjoy s

No one is alone in the Batten disease community, s

IT’S RARE DISEASE WEEK! 🦓 Want to get involved? V

🚨 TONIGHT AT 7 PM EST 🚨 If you’re a bereaved Batt

Right now, you can support the BDSRA Foundation by

VIRTUAL EVENT: Don’t forget about the Grief Chat t

🚨 CALLING FOR VOLUNTEERS 🚨 Joining us in Chicago

This fundraiser is almost ONE WEEK AWAY! You can o

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