The recent creation of a new nonprofit organization, Aniridia North America (ANA), has been announced by its founding Board of Directors. Aniridia North America is a charitable organization 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.
ANA was created to facilitate collaboration and research on aniridia in North America and to participate more effectively in the international aniridia community.
The founding ANA Board of Directors is
- Chairperson: Peter Netland, MD, PhD, University of Virginia
- Secretary: Shari Krantz, International WAGR Syndrome Association
- Treasurer: Susan Wolfe, Vision for Tomorrow
- Chairperson, Scientific Committee: James Lauderdale, PhD, University of Georgia
- Chairperson, Meetings Committee: Robert Grainger, PhD, University of Virginia
- Chairperson, Strategic Planning and Policy Committee: Kelly Trout, BSN, RN, International WAGR Syndrome Association
- Member at Large: Janelle Collins
“ANA is committed to facilitating interaction and providing support among stakeholders focused on aniridia, with an inclusive approach and meaningful engagement.” — Peter Netland, MD, PhD
ANA will serve as an umbrella organization representing a variety of North American stakeholders:
- Persons affected by aniridia and their families
- Patient advocacy organizations
- Clinicians
- Scientists
- Students
- Educators and low vision specialists
“As the ANA Member at Large and the parent of a child with aniridia, I’m excited about the opportunity to represent the patient community and engage with other stakeholders in this collaborative group.” — Janelle Collins
Aniridia North America was incorporated in the Commonwealth of Virginia in March 2021, registered as a charitable organization in August 2021, and is a registered 501(c)(3) nonprofit organization in the United States.
For more information, click here or email info@aniridiaNA.org.
Thank you for organizing this group.
One thing I haven’t seen on any of the aniridia websites is a link to the NIH NEI (National Eye Institute). Wondering if that’s because the NEI has shown little interest in funding Aniridia research, and if there are strategies to encourage more involvement.
This is an interesting thought. I’ll bring it to the attention of the board for consideration! Thank you for your feedback!