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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

  • BDSRA Memorial Names July 2, 2019
    The Batten disease community is one of support and strength, and we know that remembering loved ones is so important to you and your family. If you would like to have a name added to the Batten Disease Memorial, or update any information please click here to complete the form. All information must be submitted […]
    tkirby
  • June issue of the Illuminator newsletter June 21, 2019
    The newsletter is here! Click here to read the latest issue. (Read More) The post June issue of the Illuminator newsletter appeared first on Batten Disease Support & Research Association.
    tkirby
  • BDSRA Virtual 5K May 17, 2019
          June 9th is International Batten Disease Awareness Day! Our goal is to honor and support those affected by Batten disease and raise awareness. Join us as we celebrate families around the world and raise money for research! BDSRA is hosting the 2019 International Batten Disease Awareness Day Virtual 5K on June 9th, […]
    tkirby

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

  • Music Project for Children with CLN3 July 1, 2019
    Latest research has shown the importance of singing with Juvenile Batten Disease. Do you know someone with a diagnosis of JNCL? Would they be interested in taking part in a project about music? Who can participate? If you are the…
    BDFA
  • Scientific Officer Update June 18, 2019
    We are very sorry to announce that our Scientific Officer, Heather Band, left the BDFA on 7th June 2019 after almost seven years with the organisation. We thank Heather for her professionalism, dedication and all her hard work on many…
    BDFA
  • Materials for Awareness Day 2019 June 4, 2019
    Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…
    BDFA

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