Dear Families,

Thank you to those of you who have filled out the CLN2 survey. We have received some responses from both parents and teachers.  However, in order to make as much of an impact as possible on the outcome of NICE Brineura re-evaluation, we need as many of you as possible to fill it in. This is about your children and the future of Brineura as a treatment for CLN2 Batten disease and without your valuable and collective input we will not be able to tell your side of the story.

If anyone needs support in completing the survey, please get in contact with us at admin@bdfa-uk.org.uk.

If you are in contact with other parents who may not have seen this, please reach out to them as soon as possible as we have a deadline from NICE to complete our submission.

Thank you in advance for your support in this.

Dr Jo Nightingale, Liz Brownnutt and Zlatko Sisic

Here are the links: