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Theodore’s Social Media Hub

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Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • A Letter to the Community from Taysha Gene Therapies March 3, 2021
    Taysha Gene Therapies has recently released the attached letter on their CLN1 Gene Therapy program to the Batten community. You can read the letter here!   The post A Letter to the Community from Taysha Gene Therapies appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • Your February Newsletter has arrived! February 27, 2021
    Check out the February Illuminator!  The post Your February Newsletter has arrived! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • WORLDSymposium 2021 February 27, 2021
    WORLDSymposium 2021 February 8-12 basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances gathered virtually for the 17th Annual WORLDSymposium. BDSRA took this opportunity to educate the community about the Batten […]
    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

  • NEW BDFA CHAIR March 2, 2021
    We are delighted to announce that Dr Zlatko Sisic has become the new BDFA Chair. Zlatko has joined the Board of BDFA as the Medical and Scientific Lead in February 2020. He graduated from the Medical School in Belgrade in…
    BDFA
  • BDFA News Bulletin February 2021 February 24, 2021
    We are delighted to share our news bulletin, the first for some time, with you. We are very excited about our new partnership with the Maypole Project. The Maypole project has been running our Sibling Sanctuary and we are pleased…
    BDFA
  • New Head of Fundraising, welcome Liz Brownnutt January 18, 2021
    The BDFA team is delighted to announce that Liz Brownnutt, our new Head of Fundraising starts today. This is a key appointment as the charity moves to diversify its income and build a sustainable future, offering the very best we…
    BDFA

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