Global Genes Rare Disease Patient Registry Workshop
June 23, 2020
In early February Kelly Trout, IWSA Director of Research and Medical Advocacy, and Shari Krantz, Executive Director, attended a Global Genes DIY Workshop in Houston, Texas. The workshop focused on maximizing the usefulness of a rare disease patient registry to enable research, and also provided several small group mentoring sessions. All travel and lodging expenses for the IWSA were provided through a Global Genes grant supported by the Chan Zuckerberg Initiative.
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886