International Wagr Syndrome Association

The International Wagr Syndrome association (IWSA) is a patient advocacy organization with approximately 225 member families, engaged via a variety of support and information-sharing activities. The mission of the IWSA is to promote awareness, stimulate research, and support families affected by Wagr Syndrome. The IWSA believes in placing patients and families in the forefront of all activities of the organization. The IWSA hosts gatherings of families to share general information about Wagr Syndrome and to provide emotional support. Board members and other leaders of the organization attend conferences pertaining to rare disease research and patient advocacy.