Advocacy

GET INVOLVED: Rare Disease Week 2026

Want to get involved? Visit our website to see [...]

By Patrick Kotnik|2026-02-23T10:36:28-05:00February 23rd, 2026|Advocacy, Latest News|Comments Off

The following is a message from the Carolinas Batten [...]

By Patrick Kotnik|2025-09-11T12:01:30-04:00September 11th, 2025|Advocacy, Latest News|Comments Off

July 18, 2025—Batten Disease Support, Research, and Advocacy (BDSRA) Canada, [...]

By Patrick Kotnik|2025-07-18T16:41:03-04:00July 18th, 2025|Advocacy, Clinical News, Latest News, Research News|Comments Off

UPCOMING EVENTS There are LOTS of important events and [...]

By Patrick Kotnik|2025-05-16T09:25:04-04:00May 16th, 2025|Advocacy, Latest News|Comments Off

The 2025 International Batten Disease Awareness Day T-shirts are [...]

By Patrick Kotnik|2025-04-17T15:08:47-04:00April 17th, 2025|Advocacy, Latest News|Comments Off

Included in this email update: Batten Disease Global Research [...]

By Patrick Kotnik|2025-03-10T14:05:58-04:00March 11th, 2025|Advocacy, Latest News, Research News|Comments Off

While Rare Disease Week on Capitol Hill attendees meet [...]

By Patrick Kotnik|2025-02-25T17:54:43-05:00February 26th, 2025|Advocacy, Latest News|Comments Off

*First 50 Responses will be mailed a $10 Dunkin' [...]

By Patrick Kotnik|2025-01-21T09:47:34-05:00January 21st, 2025|Advocacy, Latest News|Comments Off

Beth Fries We have contracted Beth Fries, a [...]

By Patrick Kotnik|2025-01-16T11:00:42-05:00January 16th, 2025|Advocacy, Latest News|Comments Off

CLICK HERE TO DONATE TO BDSRA We can’t discover [...]

By Patrick Kotnik|2024-12-19T17:17:57-05:00December 27th, 2024|Advocacy, Latest News, Research News|Comments Off