AUTOINFLAMMATORY ALLIANCE INC

Who are the people you serve with your mission?

We serve anyone in need of help to navigate the challenging path of autoinflammatory diseases. This includes patients and medical professionals seeking to help their patients, and caregivers or other family members. We also have over 7200 patients in our private patient groups, which are free to join, and we help patients globally, but are based in the US. We make all of our resources open-access and are not a membership organization so anyone in need has access to join our moderated patient communities or obtain resources in print or digitally.

How is your organization using feedback from the people you serve?

To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

What significant change resulted from feedback?

We have made an effort to have virtual programs have closed captioning for the hearing impaired, and also translation into other languages, to improve access and understanding, and are working on developing more resources to address diverse patient communities and their needs better.

Which of the following feedback practices does your organization routinely carry out?

We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

What challenges does the organization face when collecting feedback?

We don’t have the right technology to collect and aggregate feedback efficiently