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Batten Disease Support & Research Association

  • What Is Batten Disease?
    • Symptoms and Diagnosis
    • Types of Batten Disease
      • CLN1 disease
      • CLN2 disease
      • CLN3 disease
      • CLN5 disease
      • CLN6 disease
      • CLN7 disease
      • CLN8 disease
      • CLN10 disease
      • Adult Onset NCL
    • Locate a Testing Center
  • Support
    • Newly Diagnosed?
    • Family and Caregiver Support
    • Nuts and Bolts of Care
    • Educational Resources
    • Support for Batten Siblings
    • Join the BDSRA Community
    • Resource Corner
    • Meet Batten Families
    • BDSRA Centers of Excellence
  • Research
    • Research and Treatments
    • Current RFPs
    • Research Awards 2017
    • Research and Clinical News
    • Learn About Clinical Trials
  • Advocacy
    • How To Help
    • Share Your Story
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    • Chapter Locator
    • Financials and Reporting
    • History and Mission
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Join the BDSRA Community

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    • Become a Member of BDSRA
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Contact Us

Finding support for you and your family is essential as you cope with the many challenges associated with Batten disease.

BDSRA is here to help in many ways.  We provide information about the disease and help families find and access a variety of community resources and programs.  We offer guidance and emotional support, help you navigate difficult systems, and connect you with other families and experts in the field — via snail mail, email, by phone or in person:

Batten Disease Support and Research Association (BDSRA)
2780 Airport Drive, Suite 342, Columbus, Ohio 43219
Call us toll-free at -800-448-4570
Email us at info@bdsra.org

Become a Member of BDSRA

  • Become a Member of BDSRA – join today!  Become a BDSRA Member
  • As a member of BDSRA, you have voting privileges to choose the BDSRA Board of Directors with one vote per paid membership.  Meet our Staff and Board Members  BDSRA Staff and Board
  • If you are a Parent or Caregiver of a loved one with Batten disease, you can connect with others like yourself in our Closed Facebook Group BDSRA on Facebook

Stay Connected to BDSRA

Receive regular updates and information from BDSRA!  Stay connected through our communications, social media outlets and special events:

  • Read past issues of the BDSRA newsletter “The Illuminator” to find out the latest updates in the Batten community BDSRA Newsletter
  • “Like” our BDSRA Facebook Page – open to all including family, friends and supporters BDSRA on Facebook
  • Attend the Annual BDSRA Family Conference, slated for July 19th- 22nd, 2018 at the Nashville Airport Marriott Hotel.  Last year’s conference had 450+ attendees!
  • Follow us on Twitter BDSRA on Twitter

 

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Recent News

BDSRA Board of Directors

BDSRA Board of Directors

BDSRA Executive Director

BDSRA Executive Director

Emerging Research Conference Travel Award Winners

Emerging Research Conference Travel Award Winners

Science

  • What Is Batten Disease?
  • Types of Batten Disease
  • Symptoms and Diagnosis
  • Locate a Testing Center

Support

  • Family and Caregiver Support
  • Newly Diagnosed?
  • Nuts and Bolts of Care
  • Educational Resources
  • Support for Batten Siblings
  • Join the BDSRA Community
  • Resource Corner
  • Meet Batten Families
  • Centers of Excellence

Research

  • Research and Treatments
  • Our Role In Research
  • BDSRA Annual Funding Cycle
    • Past Grant Awards
  • Clinical Research and News
  • Learn About Clinical Trials
  • BDSRA Family Conference

Advocacy

  • Batten Disease Advocacy and Awareness
  • Be A Rare Disease Advocate
  • You Make it Possible to Fund Our Mission
  • Share Your Story
  • BDSRA Store
  • BDSRA Membership

About BDSRA

  • About BDSRA
  • Chapter Locator
  • Financials and Reporting
  • History and Mission
  • Illuminator Newsletter
  • Our Staff and Board
  • Press and Media
Combined Federal Campaign #11781

Combined Federal Campaign #11781

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Batten Disease Support and Research Association (BDSRA) is a GuideStar Exchange Silver Participant

Batten Disease Support and Research Association (BDSRA) is a GuideStar Exchange Silver Participant

Batten Disease Support and Research Association | 2780 Airport Drive, Suite 342, Columbus, Ohio, 43219 | (800) 448-4570

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