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Rare Disease Day Recap

March 22, 2018

BDSRA’s community was very active during this year’s Rare Disease Week. Several hundred rare advocates visited their Congressional offices on Capitol Hill, February 27th and 28th. Among them were Jennifer VanHoutan from Illinois, and Sandra and Stephen Lehrman from North Carolina. Their children and […]

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2018 BDSRA Family Conference Registration is open!

March 1, 2018

Registration for the 2018 BDSRA Conference is now live! We look forward to seeing you July 19 – 22, 2018 in Nashville, TN for the 2018 BDSRA Family Conference! The deadline to register and be guaranteed a conference t-shirt is June 27, […]

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BDSRA is now accepting letters of intent (LOI) for 2018!

February 26, 2018

Focus for 2018’s Research Funding Round: Biomarkers BDSRA seeks letters of intent (LOI) from the Batten and larger lysosomal disease research community for innovative technologies in biomarkers for any of the 14 forms of Batten disease. Development of, or improvement of […]

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