- Apr19, 2018
About the Conference:
Kennedy Krieger Institute, one of the world’s premier neurogenetic research and treatment facilities, and the nonprofit patient advocacy organization “A Cure for Ellie” are teaming up to host the conference specifically for patients and doctors interested in or affected by LBSL (leukoencephalopathy with brain stem and spinal cord involvement with lactate elevation).
This two-day event will present information to help those living with LBSL manage their condition. We will bring together patients and families from around the globe to learn from one another and to hear from some of the world’s top doctors and scientists specializing in leukodystrophies.
- The different faces of LBSL
- Overcoming social challenges associated with rare diseases
- Genetics of LBSL, simplified
- Physical and occupational therapies
- General management of LBSL and mitochondrial disease
- Basics of clinical trials
- Update on pre-clinical research
- LBSL and nutrition
- Update on clinical LBSL research
Kennedy Krieger Institute
801 N. Broadway
Baltimore, MD 21205
The cost of registration is $50 per person (children under 12 are free) and will include breakfast and lunch. Register before February 16 to receive the “early bird” discount of $35 per person.
For more information, including registration and hotel information, please click here.