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Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • Your March Newsletter is here! March 30, 2021
    Your March Newsletter is Here! The post Your March Newsletter is here! appeared first on Batten Disease Support & Research Association.
    Morgan Deboth
  • 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

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

  • International Batten Disease Awareness Day News 2021 April 6, 2021
    The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…
    BDFA
  • National Day of Reflection 2021 March 23, 2021
    National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…
    BDFA
  • 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

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Theodore's Miracle