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.
- The United Leukodystrophy Foundation
- National Organization for Rare Disorders
- Global Genes
- The United Mitochondrial Disease Foundation
- The Myelin Project
- The Brooks Coleman White Foundation
Help for Today, Hope for Tomorrow
In April 2018 “A Cure for Ellie” and the Kennedy Krieger Institute hosted a two-day LBSL Conference called “Help for Today, Hope for Tomorrow,” which brought together patients and families from around the globe to learn from one another and to hear some of the world’s top doctors and scientists specializing in leukodystrophies. Presentations on everything from nutrition to clinical research can be found by clicking here.
Need Help with Medically Related Transportation?
Angel Flight East provides free air transport to qualified patients and their families by arranging flights to distant medical facilities and reuniting families during desperate times.
The Thisbe & Noah Foundation provides grants to help families cover travel costs associated with patient conferences.
Need help coping with a diagnosis?
We are here for you. Sometimes it’s just nice to talk to someone who has been down the same road. Email us at firstname.lastname@example.org.