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Batten Disease

Theodore’s Social Media Hub

Theodore’s Miracle Newsletter

Subscribe to our monthly newsletter to get the latest news from Theodore's life and our efforts to Raise Awareness for Batten disease as well as the latest updates from Batten and Rare Disease communities.

Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • September Illuminator is here! October 9, 2020
    Click here to see the Illuminator!   The post September Illuminator is here! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • July Illuminator Newsletter is Here! October 8, 2020
    Check out the July Newsletter! Read all about the 2020 Virtual BDSRA Conference and upcoming research opportunities. View is here, https://conta.cc/3gkQqnb. The post July Illuminator Newsletter is Here! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • August Illuminator Newsletter is here! October 8, 2020
    The August Newsletter is here! Learn about new advocacy opportunities with BDSRA, clinical research updates, and more! You can view the newsletter here: https://conta.cc/2YRNVSH The post August Illuminator Newsletter is here! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy

Theodore’s Miracle Newsletter

Subscribe to our monthly newsletter to get the latest news from Theodore's life and our efforts to Raise Awareness for Batten disease as well as the latest updates from Batten and Rare Disease communities.

Latest News

RSS Updates from the Batten Community

  • Notice of Annual General Meeting of the Batten Disease Family Association 2020 October 21, 2020
    Notice of Annual General Meeting of the Batten Disease Family Association NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held virtually via Zoom,at 1pm on Saturday 21st November 2020. We are…
    BDFA
  • Save our children’s sight campaign- children with CLN2 Batten disease on Brineura October 15, 2020
    Following on from yesterday’s announcement about the restarting of our research function, the BDFA is pleased to announce our collaboration with a group of families who have children with CLN2 and are accessing enzyme replacement therapy (ERT). This campaign is…
    BDFA
  • BDFA RESEARCH ANNOUNCEMENT October 14, 2020
    We are writing to announce our intent to restart research activities funded by the BDFA, in collaboration with families. As you know, we had to pause this. Research is a key commitment in our plans and we are excited to be…
    BDFA

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