The recent creation of a new nonprofit organization, Aniridia North America (ANA), has been announced by its founding Board of Directors.
This umbrella organization will represent, serve, and support North American aniridia patients and their families, researchers and clinicians, and patient advocacy organizations. ANA will foster collaborative relationships between these and similar stakeholders around the world. These relationships are key to furthering research, disseminating information, and optimizing clinical care.
The founding Board of Directors of Aniridia North America includes Kelly Trout, IWSA Director of Research and Medical Advocacy, and Shari Krantz, IWSA Executive Director. Kelly and Shari were instrumental in helping to form ANA. Shari is currently serving as ANA Board Secretary, and Kelly as ANA Board Member, Chair of Strategic Planning and Policy. Other founding Board members include Peter Netland, MD, PhD, University of Virginia; Susan Wolfe, Vision for Tomorrow Foundation; James Lauderdale, PhD, University of Georgia; and Robert Grainger, PhD, University of Virginia. Janelle Collins is serving as ANA Board Member at Large.
IWSA and ANA
The IWSA is excited about this new organization because nearly every individual with WAGR syndrome has aniridia and improving diagnosis and treatment of this condition is a high priority for the IWSA.
The IWSA's involvement with ANA will:
Guarantee representation of patients with WAGR syndrome in the global community
Improve access to accurate and timely information about aniridia in WAGR syndrome
Increase opportunities for patients with WAGR syndrome to participate in research
Improve clinical care for patients with WAGR syndrome and aniridia
ANA to Host Scientific Symposium
The 2021 Aniridia North America Symposium: PAX6, Aniridia, and Beyond will bring together top researchers from North America and around the world November 5-7 at the University of Virginia, Charlottesville. This meeting, like its predecessor, the 2019 John F Anderson Symposium: PAX6, Aniridia, and Beyond, will provide a forum for the scientific community to present current aniridia research findings and facilitate collaboration on future studies.
The IWSA's Kelly Trout and Shari Krantz will attend and participate in the symposium. After the conference, Kelly and Janelle Collins will prepare and share information for patients and their families.
To learn more about ANA, visit www.aniridiaNA.org
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886