Trustees (voluntary)

We are looking for at least two new trustees with the time, energy, and skill to help us support people with Ehlers-Danlos syndromes (EDS). Our vision is to improve the quality of our members’ lived experience. We will achieve this by reducing the time to diagnosis from an average of 10 years to 10 months. We will also work to sustain our members as they manage their condition and their families, colleagues, and friends, all of whom are affected directly or indirectly by these complex and challenging conditions.

We want to strengthen the diversity of our board and welcome expressions of interest from people traditionally under-represented on charity boards. You do not have to have been a trustee before. Lived experience of EDS is welcome but our priority is to attract candidates aligned with our vision and mission and determined to engage, contribute, and challenge constructively.

Our trustees come from all walks of life: the private sector, the NHS, research, public affairs, the law, charities, and IT. The role is interesting and rewarding, giving you the chance to exercise existing skills and develop new ones. Being a trustee is an opportunity to gain valuable board level experience.

Board meetings are held quarterly for three to four hours on Saturday. You should expect to have to make a time commitment outside these meetings (e.g. to read and contribute to papers, respond to emails, and join ad hoc calls) of at least two hours per month.

Qualifications and experience:

We are looking for experience in one or more of the following areas:

  • Safeguarding
  • Human resources
  • Scientific/clinical research
  • Marketing (particularly digital marketing)
  • Communications

 Essential personal qualities:

  • Empathy with the mission and ethos of the charity
  • Ability to listen, identify the salient issues, and contribute to discussion whilst respecting the contributions of others
  • Ability to reflect and contribute something of personal wisdom
  • Ability to think strategically, evaluate, and communicate proposals succinctly
  • Patience, tact, and discretion
  • Ability to network effectively

 Highly desirable skills and abilities:

  • Ability to read and understand financial reports, balance sheets, and budgets
  • Understanding risk management and compliance
  • Management /business/commercial experience/ stakeholder management
  • Ability to operate strategically with the staff and volunteers of the organisation.

 If this interests you, please submit a CV and personal statement by 29 November 2021 with information about your experience and interests and how they will contribute to our work to Stephen Stacey (Chair):

The selection process will consist of an informal discussion with the Chair by telephone followed by an interview with the Chair, Managing Director, and another trustee. Successful candidates will be invited as active participants of a board meeting, following which the board may confirm appointment.

Salary: £9,400 – £10,200 pro-rata, based on 14 hrs/week (full-time equivalent £23,500 – £25,500), depending on experienceIf you’re patient, compassionate, a good listener and committed to providing excellent support to people with a complex, long-term health condition you could be our next Helpline Advisor.

The role

The Helpline Advisor is integral to one of our core services, providing a broad range of information and support, mainly via telephone and email, to people affected by the Ehlers-Danlos syndromes (EDS) and related conditions. People accessing our busy service include those with the condition(s), those seeking a diagnosis, their families, friends and healthcare professionals.

The Helpline Advisor reports to the Advice and Information Manager who works alongside them on the helpline. There is no need to know anything about the Ehlers-Danlos syndromes to apply for this role as training will be given. This role can be home-based where an appropriate working environment, suitable for handling confidential, sensitive phone calls, will be essential.

About You

  • You have experience of working in an environment providing support to others
  • You must be supportive, patient and empathetic
  • You have the ability to set and maintain professional boundaries
  • You have excellent telephone, verbal and written communication skills
  • You are able to research and explain complex information in simple terms
  • You are comfortable working as part of a team and have the ability to accommodate the different working styles of others
  • You have experience of working to defined processes and procedures
  • You are proficient in the use of email, Microsoft Office software and social media in a professional setting
  • You are committed to your own ongoing learning and development

Ideally, you will have experience of working on a helpline or in a health or social care setting and of identifying and communicating safeguarding issues.


  • 14 – 18 hours per week. Days and start/finish times to be agreed but must include Fridays.  Flexible home/work base available with occasional travel to Borehamwood, Hertfordshire.
  • Contributory pension scheme
  • Monthly clinical supervision (optional)

Application process

Please send a CV and covering letter outlining how your skills and experience meet the requirements of the role to Closing date: midnight Sunday 27 June 2021. For any additional enquiries about the role please contact Kay Julier on 0208 736 5604. We reserve the right to close to applications prior to the closing date, should a large number be received, so please submit your application as soon as possible.

A fully Enhanced DBS check will be undertaken for the successful applicant.