The Ehlers-Danlos Society

Who are the people you serve with your mission?

The Ehlers-Danlos Society supports people all around the world living with the 13 types of Ehlers-Danlos syndromes, and the hypermobility spectrum disorders, their family, friends, and healthcare professionals.

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

Electronic surveys (by email, tablet, etc.), Suggestion box/email, Breaking Down Barriers initiative,

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?

Offered Let’s Chat virtual support groups at times to suit all timezones, created COVID-19 specific groups, and quarterly groups for specific demographic groups in our community such as LGBTQIA+. Implemented ALT text and image descriptions on our social media posts to increase accessibility. Created an Ask The Society webinar with an opportunity to ask questions to the President and CEO, and Chair of the Board of Directors about all aspects of the Society’s programming and mission.

With whom is the organization sharing feedback?

The people we serve, Our staff, Our board, Our funders, Our community partners,

How has asking for feedback from the people you serve changed your relationship?

The collaboration with the community has seen attendance in the Let’s Chat groups grow rapidly with excellent feedback from people finding support. Average group size has grown from 15 to 40 per online group meeting and feedback internationally is positive that more are able to attend and find support, and in turn feel more aligned with the Society. Feedback from Breaking Down Barriers has developed relationships internationally with diverse groups in the community to inspire resource development, increase representation in campaigns and in campaign ideation.

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

We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), 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?

It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,