Bee for Battens
Bee For Battens is a place where families and persons affected by Battens Disease can come together to help raise awareness about this devastating condition whilst providing support for one another.
Our contacts and networking with other Battens Disease parents, families & Charities around the globe has grown and grown, which has provided us with the most reliable source of information and support available, from those who live with Battens day in day out.
In the past it has been very difficult for parents to find any information at all about this illness. The rarity of the disorder means that few doctors are aware of it and parents of course want to know, on a practical level, how they can best help their child.
- Tony Heffernan Bee for Battens