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October 2019 Oct 2019

The latest issue of the newsletter is here! September 4, 2019
Click here to read the latest issue of the newsletter, including science updates from the family conference. (Read More) The post The latest issue of the newsletter is here! appeared first on Batten Disease Support & Research Association.
tkirby
July Issue of the Illuminator August 9, 2019
Click here to read the latest issue of the newsletter (Read More) The post July Issue of the Illuminator appeared first on Batten Disease Support & Research Association.
tkirby
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

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

Updates from the Batten Community

Could you be a Trustee? October 4, 2019
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten disease to maximise their quality of life and secure the…
BDFA
NEWS!! Absolutely delighted to announce that Brineura is approved!! September 11, 2019
Life-changing treatment on the NHS for children with rare, deadly disease We are beyond delighted to announce that Brineura has been approved. Further details to come. Families have been absolutely incredible in their strength and resilience in getting this over…
BDFA
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