What is Aniridia North America and why was it created?
Aniridia North America (ANA) was created to represent, serve, and support the North American community of persons affected by aniridia and their families, patient advocacy organizations, and clinicians and scientists.
The founding group was motivated to create the organization after attending the John F. Anderson Symposium on Aniridia: PAX6 and Beyond, held at the University of Virginia in 2019. The Symposium highlighted the value of and demonstrated the need for:
- a collaborative approach to research on this disorder
- an ongoing framework for partnership between stakeholders
- a collective voice for North American stakeholders to more effectively participate in the international aniridia community
The organization was incorporated in the Commonwealth of Virginia in March 2021 and is registered as a 501(c)(3) non-profit in the United States.
What does ANA do?
ANA serves as an umbrella organization to provide a platform for communication and collaboration among researchers, clinicians, and patient advocacy organizations. In that role, ANA
- represents, serves, and supports the North American community of persons affected by aniridia and their families, patient advocacy organizations, and clinicians and scientists
- provides a platform to assist organizations who support persons with aniridia
- serves as the collective voice of NA stakeholders to the international aniridia community.
- supports clinical providers and collaborate with groups of clinicians who care for aniridia patients
- collaborates with researchers and scientists to develop and support studies of aniridia
- strengthens and expands global research focused on aniridia
- educates and inspires the next generation of clinical providers and scientists
- facilitates and hosts scientific symposia.
Who is ANA for?
ANA represents a variety of stakeholders:
- Persons affected by aniridia and their families
- Patient advocacy organizations
- Educators and low vision specialists
How is ANA different from other aniridia organizations?
ANA will not replace existing aniridia-related patient advocacy groups but will work to support and enhance the outreach and collaborations of these groups in North America and internationally. ANA is not intended to do the same work that patient organizations do, such as providing support, information, awareness activities, or research funding.
How is ANA funded?
ANA is currently funded through private donations, research organization support, and patient advocacy organizations. ANA is a volunteer-driven non-profit organization.
What does ANA fund?
Initially ANA will fund and support scientific symposia, attend aniridia research-related meetings, and support dissemination of research findings. In the future, ANA may ask member organizations and members at large to support specific events and initiatives.
Does ANA fund research?
ANA does not currently provide funding for research. ANA will facilitate aniridia-related research by supporting scientific symposia, fostering collaboration between scientists and funders, and by exploring innovative ways to expand the aniridia research landscape.
What is the governance of ANA?
The governance structure of ANA consists of a Board of Directors. The founding Board of Directors includes:
- Chair: Peter Netland, MD, PhD, University of Virginia
- Janelle Collins, Member at Large
- Rob Grainger, PhD, University of Virginia
- Shari Krantz, International WAGR Syndrome Association
- Jim Lauderdale, PhD, University of Georgia
- Kelly Trout, BSN, RN, International WAGR Syndrome Association
- Susan Wolfe, Vision for Tomorrow
How do I become a member of ANA?
Membership in ANA is free, and open to anyone interested in aniridia. Simply sign up here to receive updates and information from ANA.