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Batten Disease Global Research Initiative Announces 2026 Research Grant Recipients – BATTEN DISEASE GLOBAL RESEARCH INITIATIVE
Batten Disease Global Research Initiative Announces 2026 Research Grant Recipients – BATTEN DISEASE GLOBAL RESEARCH INITIATIVE
FOR IMMEDIATE RELEASE May 15, 2026 Batten Disease Global Research Initiative Announces 2026 Research Grant Recipients The Batten Disease Global Research Initiative (BDGRI) is proud to announce the recipients of its 2026 Research Grant Round, with a total of USD $150,000
International Batten Disease Awareness Day Apparel
International Batten Disease Awareness Day Apparel
Show your support for those who love someone dealing with Batten Disease. Our goal is to sell as many shirts and sweatshirts as possible in order to flood our communities...
SIGN UP FOR OUR EMAIL LIST
SIGN UP FOR OUR EMAIL LIST
Latest Batten Disease Research Updates with Dr. Ineka Whiteman
Latest Batten Disease Research Updates with Dr. Ineka Whiteman
2026 Annual Family Conference
Main Page
Main Page
Pre-conference activities will take place on Thursday, July 9, 2026. Hotel Reservations Grants to Attend Volunteer Opportunities BECOME A SPONSOR
Registration
Registration
Registration This year’s conference will be in-person only. Selected sessions will be recorded and made available post-conference Questions? Contact Registration Support P: 866-792-5399 (Monday - Friday 8:00 a.m. - 5:00 p.m. Eastern US Time) BDSRA@sswmeetings.com
Hotel Reservations
Hotel Reservations
Grant Application
Grant Application
Volunteer Info
Volunteer Info
UPCOMING EVENTS
Coffee Chats Registration
Coffee Chats Registration
BDSRA is dedicated to providing family support services, funding research, and advocating for treatments and cures. 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 all forms of Batten disease in North America and supporting patients in countries who offer none.
GIVING
Donate to BDSRA
Donate to BDSRA
Ways to Give to the BDSRA Foundation
Ways to Give to the BDSRA Foundation
DONATE ONLINE If you prefer to donate online once or become a monthly donor, then please feel free to use our online donation form! Click here to access the form. WRITE A CHECK Who remembers life before the plastic card in your wallet? BDSRA gladly accepts gifts by CHECK in the mail! We receive monthly
Give to a Fam Fund
Give to a Fam Fund
June 9 is International Batten Disease Awareness Day.
LATEST NEWS
BDSRA Foundation Announces Children’s National Hospital as 12th Site in Batten Disease Clinical Centers of Excellence Program
BDSRA Foundation Announces Children’s National Hospital as 12th Site in Batten Disease Clinical Centers of Excellence Program
GAHANNA, OH (March 24, 2026) – The BDSRA Foundation continues to expand access to expert Batten disease care with Children’s National Hospital in Washington, D.C., officially joining its Batten Disease Clinical Centers of Excellence Program as an Affiliate Center. Children’s National joins a growing network of leading
BDSRA Foundation Announces Boys Town National Research Hospital as New Site in Clinical Centers of Excellence Program; Two Sites Earn CoE Promotions – Batten Disease Support & Research Association
BDSRA Foundation Announces Boys Town National Research Hospital as New Site in Clinical Centers of Excellence Program; Two Sites Earn CoE Promotions – Batten Disease Support & Research Association
GAHANNA, OH (January 29, 2026) – The Batten Disease Support, Research, and Advocacy (BDSRA) Foundation has officially announced Boys Town National Research Hospital as the newest site in the Batten Disease Clinical Center of Excellence Program and the promotion of NYU Langone Health
Important Announcement: Building a Stronger Future for BDSRA
Important Announcement: Building a Stronger Future for BDSRA
January 14, 2026 Dear Community, For 39 years, BDSRA has been dedicated to creating a world without Batten Disease. Our mission is to support Batten families, fund and facilitate research and advocate for treatments and a cure. As we look toward the next chapter of our growth, we are writing to share some important updates regarding our
BDSRA Foundation Welcomes Four New Board Members
BDSRA Foundation Welcomes Four New Board Members
MAJOR GRANT NEWS
MAJOR GRANT NEWS
Board Meeting Minutes
Board Meeting Minutes
RESEARCH & CLINICAL TRIALS
Clinical Trials & Natural History Studies Chart
Clinical Trials & Natural History Studies Chart
Clinical Trials Natural History Studies
BDCRC | Rare Diseases Clinical Research Network
BDCRC | Rare Diseases Clinical Research Network
Batten Disease Global Research Initiative
Batten Disease Global Research Initiative
SIGN UP FOR THE BATTEN GRI EMAIL LIST ABOUT THE BATTEN DISEASE GLOBAL RESEARCH INITIATIVE Founded in 2024, the Batten Disease Global Research Initiative is a consortium of peak patient advocacy organizations worldwide, that share the common goal of advancing research for all forms of Batten disease,
BATTEN FAMILY SUPPORT
Batten Disease Centers of Excellence
Batten Disease Centers of Excellence
Batten Disease Clinical Center of Excellence Program The BDSRA Foundation is a strong advocate for the provision of specialized, comprehensive clinical care and support for individuals living with Batten disease. The Center of Excellence Program aims to optimize patient outcomes, accelerate research, and improve the quality of life for individuals
BDSRA Family Grants
BDSRA Family Grants
Family Grants - Financial Help for Batten Families BDSRA has multiple grants available to assist Batten Families. For any questions on family grants, please send an email to info@bdsrafoundation.org Batten Family
BDSRA Family Register
BDSRA Family Register
NORD's Batten Disease Emergency Relief Program
NORD's Batten Disease Emergency Relief Program
Financial Resources | EveryLife Foundation
Financial Resources | EveryLife Foundation
HOW YOU CAN HELP
BDSRA Fam Funds
BDSRA Fam Funds
BDSRA is dedicated to providing family support services, funding research, and advocating for treatments and cures. 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 all forms of Batten disease in North America and supporting patients in countries who offer none.
Fundraiser Shops
Fundraiser Shops
$5 Fridays
$5 Fridays
FIND YOUR REPRESENTATIVE
FIND YOUR REPRESENTATIVE
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