Last Updated: 13 April 2026

The Ehlers-Danlos Society

Feedback Policy

Feedback  

The Ehlers-Danlos Society (hereby referred to as The Society) wants to provide you with the best opportunity to give feedback on our work for our shared mission, educational programs, research grants, and fundraising. 

We value your feedback and are committed to using your compliments, suggestions, or complaints, to improve and develop our programming and work. We continue to work with the community to formulate inclusive research priorities and practices, and if you have feedback, we would like for you to share this with us. 

How to Contact Us  

If you have any questions about The Society’s Feedback Policy, please do not hesitate to contact us using the form on our Contact Us page. 

Or write to us at: The Ehlers-Danlos Society Headquarters, 447 Broadway 2nd FL #670, New York, NY, 10013, USA or The Ehlers-Danlos Society Europe Office, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, United Kingdom 

We may use your positive feedback to support our mission, for example, as comments in our printed publications, grant applications, on our website, and on social media. We use quotes anonymously, however, occasionally it can be useful to use the name of the person who has provided the feedback, and if this is needed, we will always contact you to request your permission. 

Your contact details will never be given to anyone outside of The Society unless we are required to under the Data Protection Act. 

Policy Review and Amendments 

This policy will be reviewed annually, by the end of the first quarter (Q1), to ensure that it continues to meet the needs of The Society and its community.