What should trustees do? 

Trustees have multiple responsibilities and all of which centre around developing and looking after your organisation:

  1. Ensure your charity is carrying out its purposes for the public benefit
  2. Comply with your charity’s governing document and the law
  3. Act in your charity’s best interests
  4. Manage your charity’s resources responsibly
  5. Act with reasonable care and skill
  6. Ensure your charity is accountable

Useful skills to have in a trustee board, are people who understand: 

  • Your purpose and need
  • Law and governance
  • The act of taking responsibility
  • Finance and management

What is the position in patient groups? 

For many rare disease patient groups the trustees are the people who run the charity as there are no employees or other volunteers.  Often the trustees are friends and family of the original founders, with those founders doing the bulk of the work.

In these cases the ‘additional’ trustees are there from a desire to help, but may lack time, knowledge, skills, or drive to support the organisation.

A good number of groups have the support of a clinician or a researcher on their trustee board.

Larger and more established patient groups may have employees who run the organisation day to day, leaving the trustees in a more traditional advisory role.