Christina Hertel, James and Joann Read and Sherri Seyfert at our 2017 Symposium in Stony Brook, NY

Education is at the forefront of our work. We provide information to our patients, their families, clinicians and scientists.

In addition to the information on our web site, we hold a biannual symposium that provides information on the best practices in the management of the disease as well as the latest research developments. We all learn from each other.

Learn More