BDFA (den engelske foreningen) deltar i arrangementskomiteen og har i den anldning sendt oss følgende mail. Som det fremgår er det anledning for oss alle til å foreslå temaer for konferansene:

Dear All

Please find attached the link for the e survey which I mentioned at a last meeting.  The BDFA have used it to get feedback from our members on what they would like to see at NCL2012.  It would be very useful for planning purposes to gather information from other affected families around the world so I would be grateful if you could disseminate the link.  Please also let me know of any other sessions or content you would like to see in the patient organisation sessions.

http://www.surveymonkey.com/s/5K6XDLB

Thanks

Andrea

Andrea West
Batten Disease Family Association
Charity Manager
PO Box 504
FLEET
GU51 9GE

Direct line +44 (0)1252 416110

The Batten Disease Family Association –a supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease and promoting awareness of the disease and research into potential therapies