BDSRA Board Member, Batten mother will be a panelist in FDA virtual workshop
The fight for gene therapy has been a long, uphill [...]
Rare Disease Week offers a storybook ending and road for optimism
By Patrick Kotnik - BDSRA Marketing & PR Coordinator We [...]
READ | The Illuminator February Edition Has Arrived!
February 2023 [...]
Stronger together: The story of four Batten mothers who teamed up to speak to the FDA
It started with one mother of two CLN2 Batten disease-affected [...]
Patterson wedding raises over $9,000 in donations for BDSRA
Prior to John and Carol Patterson’s wedding this past November, [...]
Reserve Your Rooms for the 2023 BDSRA Annual Family Conference!
Rooms can now be reserved for this year’s BDSRA Annual [...]
Statement from Global Batten Disease Organizations on CLN7 Research
Dear families, As some of you have already heard, last [...]
READ | The Illuminator January Edition Has Arrived!
January 2023 [...]
BDSRA unveils 2022 Annual Appeal total
BDSRA Foundation to unveil the grand total for the 2022 [...]
BDSRA Board of Directors Quarterly Meeting | January 21, 2023 Agenda
Read the agenda below for the BDSRA Foundation Board [...]
