You, the patient, will guide the directives in the health outcomes you want to see and help to increase disease awareness within and without the medical community. In addition, along with you, we seek to drive and encourage the translation of scientific knowledge into the most up-to-date and highest level of clinical best practice available.

The ACSN arose from a collective recognition that collaboration between patients, their families, clinicians, and research scientists is essential if we are to achieve these desired outcomes.