The History of ANA
In early 2020, a small group consisting of a clinician/researcher, two scientists, and three representatives of patient advocacy organizations began discussions about the potential benefits of a new nonprofit organization focusing on aniridia. The group was motivated to convene 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
After viewing the results of a survey of the aniridia patient communities in the US and Canada, and conferring with colleagues outside North America, the group decided to create Aniridia North America. The organization was incorporated in the Commonwealth of Virginia in March 2021.
Represent, serve, and support the North American community of persons affected by aniridia and their families, patient advocacy organizations, and clinicians and scientists
Assist Patient Advocacy Organizations
ANA aims to augment the efforts of, facilitate interaction between, and provide support for groups and organizations focused on aniridia-related problems, with an inclusive approach and meaningful engagement. This includes coordinating and synergizing the efforts of these groups with similar international organizations.
Strengthen and Expand Research
ANA desires to strengthen and expand research into aniridia-related conditions. Research support would include hosting and facilitating scientific symposia, development and support for databases related to aniridia, and collaborating with scientists to develop studies related to aniridia. The objective would be not only to keep pace with scientific developments, but to lead in promoting new research.
ANA will promote the dissemination of information and communication among all aniridia-related stakeholders in North America and their affiliated groups and organizations.
Support Clinical Providers
ANA will assist clinicians who care for aniridia patients and their families by providing educational and communication resources, information regarding new therapeutic approaches, and otherwise assisting in ways that improve care for aniridia patients.
ANA will serve as a collective voice of North American stakeholders to the international aniridia community. To do so, ANA will make every effort to coordinate its activities and efforts with Aniridia Europe and other international organizations to provide more effective support and affiliations for the global aniridia community.
Educate and Inspire
ANA aims to educate and inspire the next generation of clinical providers and scientists to work collaboratively with aniridia patients. This includes attracting investigators to this field, and helping to develop the next generation of investigators who would focus on these problems.
Persons affected by aniridia and their families
Patient Advocacy Groups
Groups supporting patients with aniridia and their families and advocating for their needs
Doctors who treat patients with aniridia
Researchers working to improve outcomes for patients with aniridia
The next generation of clinicians and researchers focused on aniridia
Educators & Low Vision Specialists
Teachers, vision itinerants, and other education professionals focused on optimizing access to learning
ANA will maintain an inclusive approach to patients, families, clinicians, scientists, and organizations.
ANA will develop fair representation for patients and families, clinicians, investigators, and organizations through committees and the operating board, balancing stakeholder interests and respecting the contributions of each group, to the greatest extent possible.
ANA will maintain transparency, integrity, and ethical behavior within ANA and with affiliated groups and organizations.
ANA will provide meaningful engagement of, stakeholders in the management and strategic planning of the organization.
ANA will maintain independence from any specific academic center, while recognizing the potential for synergy and resources that academic institutions can provide.
ANA will minimize operational expenses for the organization, in order to minimize or eliminate cost for members.