BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION
Batten Disease Support & Research Association
561918696
Raleigh, NC 27612 USA
bdsrafoundation.org
bdsra
bdsra
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News
BATTEN AWARENESS DAY IS 8 DAYS AWAY! What is Batten disease? This is the common question asked by newly diagnosed families and those who first hear about this disease. SHARE THIS POST to educate, raise awareness, and help us reach our fundraising goal: https://t.co/3WJHw5gg1p https://t.co/kG84hcIhJi (tw)
Mark your calendars! We will host a Grief Chat for bereaved Batten parents three weeks from tonight. Please complete this form if you’re new to the Grief Chats, and you will receive email reminders and the Zoom link to join: https://t.co/0objysATNg #BattenAdvocatesForACure #FYP https://t.co/366cNybCFm (tw)
Poslední diskuze
Nearby
4.5
Raleigh
About the organization
- E12, G80, G50 -
About Us BDSRA is dedicated to funding research for treatments and cures providing family support services advancing education raising awareness and advocating for legislative action. Founded in 1987 by parents seeking to build a network for those diagnosed with Batten disease BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease the worlds of medical science research and families must work together toward a common goal discover treatments and cures while assuring a better quality of life for those living with the disease. Support Research Advocacy Recent News The Latest BDSRA Batten Disease Community Events and Updates Patrick Kotnik20250310T1405580400March 11th 2025 Included in this email update Batten Disease Global Research Initiative Update The return of the International Batten Disease Awareness Day TShirt Design Contest Conference Grant applications Rare Disease Week Recap Fam Funds Update Newsletter Update Read below to catch up on the latest news and events in the Batten disease community.
Fund Raising and/or Fund Distribution Specifically Named Diseases Nerve, Muscle, and Bone Diseases
