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Treasurer and two new trustees to help us support people with Ehlers-Danlos syndromes (EDS).

The Ehlers Danlos Support UK
United Kingdom (GB)
Closing date
3 May 2024

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We are looking for a Treasurer and 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 are the national charity that supports those with EDS. For over 30 years we have provided direct support, information, and advice specific to the UK to people affected by EDS. We bring together people with EDS and HSD in the UK to equitably access diagnosis, treatment, and care. We do this through:

Awareness – We advocate for and empower our community to drive change. We raise their voices, and work with the NHS across the UK in pursuit of services accessible by all.

Support – We provide a platform to support and connect our community. We deliver information and advice on living with EDS/HSD. 

Knowledge – We build knowledge through information, training and enabling research. We confront misunderstanding and challenge inequality.


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.


Due to planned retirements, we are looking for a new Treasurer, and two new trustees for the Board. EDS UK is an equal opportunity employer. People with lived experience of Ehlers-Danlos syndrome or hypermobility spectrum disorders, from Black, Asian and minority ethnic backgrounds, LGBTQIA+ individuals and people with disabilities are strongly encouraged to apply.


Board meetings are held quarterly for three to four hours on Saturday at present. 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:

  • Finance, Accountancy & Treasury Public Affairs UK Law and Regulation Public/Voluntary sector service management or commissioning 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 3 May 2024 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, a conversation with the Chief Executive, followed by an interview with the Chair, and other trustee(s). Successful candidates will be invited as active participants of a board meeting, following which the board may confirm appointment.




Apply for Treasurer and two new trustees to help us support people with Ehlers-Danlos syndromes (EDS).

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