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November 2019 Nov 2019

The latest issue of the newsletter is now available October 29, 2019
The latest issue of the Illuminator is here. Click here to read about Rare Disease Week, Global Genes, Trnds Symposium and more. (Read More) The post The latest issue of the newsletter is now available appeared first on Batten Disease Support & Research Association.
tkirby
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

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

Seeking part-time CEO October 25, 2019
We would like to announce that we are looking for a new part-time CEO to take the BDFA forward. The new CEO will work 30 hours a week, in line with our restructured budget. Samantha Barber is leaving the BDFA…
BDFA
Dementia Strikes Children Too Campaign Update October 22, 2019
As you recall, the Dementia Strikes Children Too campaign has been working to raise awareness of the conditions that affect our children and campaign for better access to services and support for our families since 2018. Now, building on the campaign’s success…
BDFA
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