Resources
The following resources provide information, support, and guidance for both those affected by NCL and for those looking to learn more about the disorder. The Batten Disease Support and Research Association (BDSRA) is the biggest network of support and research for NCL disorders, which are often all grouped under the label "Batten's Disease." This is by no means a comprehensive list.
- Batten Disease Support and Research Association
- Children’s Brain Disease Foundation for Research
- Institute for Basic Research in Developmental Disabilities
- Beyond Batten Disease Foundation (Family Groups /Juvenile NCL)
Many NCL families have their own platforms for documenting, fundraising, and sharing their experiences. Some may be found through the BDSRA website. We offer sincere respect, heartfelt wishes, and hope to each of them.