Last Updated: 11 February 2025

The Ehlers-Danlos Society

Safeguarding Statement

The Ehlers-Danlos Society (hereby referred to as The Society) wants to enable an environment where everyone is kept safe from harm. We are committed to safeguarding everyone involved in our organization and the work we do. We commit to protecting everyone who comes into contact with The Society, or who is employed by us, regardless of race, age, ability, gender, identity, sexual orientation, religion, or belief from different forms of injustice, discrimination, and abuse. 

The Society wants to work with everyone to create a safe environment where: 

• Harm, exploitation, and abuse are prevented 

• Our colleagues and the community feel supported to thrive 

• Staff, volunteers, and the community feel safe raising concerns and complaints 

• Causes of harm, exploitation, and abuse are well understood 

• It is recognized across the organization that safeguarding is everyone’s responsibility 

The Society will not tolerate harm, exploitation, or abuse in any form by, or to our staff, and will apply proportionate disciplinary action where a breach of our safeguarding policy has occurred. 

Abuse is a violation of an individual’s human or civil right by any other person. It is where someone does something to another person, or to themselves, which puts them at risk of harm and impacts on their health and wellbeing. These effects may be experienced in the short and long term and can sometimes be lifelong. 

We actively encourage our staff, volunteers, and the community to speak up about things which they think could cause harm and we will act promptly, where appropriate when concerns have been raised. The Society also has an internal Whistleblowing Policy which encourages staff to report concerns. 

We highly value the contribution of our staff and volunteers and offer them a range of support to manage and cope with the sometimes-challenging nature of our work. We are committed to creating a safe organization to work and a supportive and rewarding one. 

Confidentiality  

The Society expects all employees, volunteers and board members/trustees to maintain confidentiality.  Information will only be shared in line with the General Data Protection Regulations (GDPR) and Data Protection. However, information should be shared with the Local Authority if a child is deemed to be at risk of harm or contact the police if they are in immediate danger, or if a crime has been committed. 

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. 

How to Contact Us  

If you have any questions about The Society’s Safeguarding Statement, please do not hesitate to contact us.  

Email us at: [email protected] 

Call us: +1 410-670-7577 or +44 203 887 6132 

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