Information is power. The more informed we are, the more power we have over our health and our future. Here are some resources to help LBSL patients and families become there own best advocates and live the best life possible.

Have LBSL and want to Connect with Other Families and Individuals?

The “LBSL Families” Facebook group allows patients and parents to communicate directly with one another.

*This group is open only to LBSL patients, their parents or caregivers.

Want to Find Out What’s Happening in the World of Rare Disease?

There are a number of wonderful organizations dedicated to helping families like yours navigate the world of rare disease.