Last Updated: 22 March 2024

The Ehlers-Danlos Society

Executive Pay Policy

The Ehlers Danlos Society (hereby referred to as The Society) is committed to making decisions that are in the best interests of the charity but ultimately in the best interests of the community. This policy ensures that we do not compromise our mission and values when it comes to executive pay. 

The Society recognizes our responsibilities towards our global community, donors, supporters, staff, and the public. We understand the significance of raising accountability and transparency in all aspects of our work. Ensuring we secure the right people to deliver our ambitious plans and to lead our organization is key to our mission. We commit to paying all our employees a fair salary that is competitive within the charity sector, proportionate to the complexity and responsibilities of each role, and in line with our charitable objectives.  

How Executive Pay is Decided Upon and Governed 

Our Board of Directors/Trustees will determine and authorize the salary of our Chief Executive Officer (CEO). All other Executive’s salaries will be determined and authorized by our CEO.  

Performances of our CEO and Executive Directors are assessed annually during our performance and development reviews using in-depth self, peer and manager feedback. Our CEO is appraised by our Board of Directors/Trustees, and our Executive Directors are appraised by our CEO. Our pay award process is based on the outcomes of these reviews. 

For transparency and openness, we believe it is important to publish the details of our executive roles as follows: 

The salaries of our Executive Directors and CEO fall within the below ranges each year depending on their experience and market benchmark. 

*some of our executives are paid in GBP, we have converted these to USD using conversion rates on 12/31 each year. Part-time roles reflect the pro-rated, paid amount * 

  • 2019 $24,000 and $148,612 
  • 2020 $24,000 and $152,014 
  • 2021 $24,000 and $151,558 
  • 2022 $29,500 and $141,885 
  • 2023 $29,500 and $147,500 
  • 2024 $34,000 and $194,000 

Our Executive roles are as follows:  

  • Chief Executive Officer  
  • Cheif Medical Officer 
  • Chief Scientific Officer 
  • Financial Director 
  • Operations Director 
  • Events Director  
  • Marketing Director 
  • Community Education Director 
  • Development Director

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 Executive Pay Policy, please do not hesitate to contact us.  

Email us at: 

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 

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