Current Vacancies

An exciting opportunity has arisen for a new Trustee to join Annabelle’s Challenge to lead this vital and passionate national charity in achieving its goals to provide effective support to patients of vascular Ehlers-Danlos Syndrome and their families.

What will you be doing?

Annabelle’s Challenge is looking for a new Trustee to play a significant part in developing and growing the organisation. As the charity starts the next phase of its strategy, with a sound financial footing, a supportive stakeholder community and some exciting Research projects commencing now is the perfect time to build upon the capabilities of the existing Board of Trustees.

The Trustee will work with the Chair in ensuring the organisation pursues its objectives, complying with charity and company law. Additionally, the trustee will make an invaluable contribution to the board and help ensure that Annabelle’s Challenge continues to strengthen its relationships with its key stakeholders including patients and their families, the two key NHS EDS centres in Sheffield and London, Research providers and medical professionals.

The Trustee will take decisions for the benefit of the charity, with integrity, strategic vision, good independent judgment and good communication skills whilst working effectively as part of a team. We want to hear from passionate individuals, ideally with experience of one or more of the following: previous trustee roles, rare genetic conditions, research, safeguarding and governance. If you have experience of vascular Ehlers-Danlos Syndrome either professionally or personally then we would really like to hear from you. 

The key responsibilities of the Trustee will be as follows:

• To utilise your skills and experience to fulfil their duties and responsibilities for proper governance of the charity.
• To attend and fully participate in board meetings, currently quarterly, ensuring they are based on clear agendas and documented correctly.
• To undertake regular annual training to ensure you understand the obligations and responsibilities of as a Trustee.
• To represent the organisation at appropriate events, meetings and functions and to act as spokesperson for the organisation where relevant.
• To support the Chair and CEO with financial and commercial decisions in recognition of the need for a sustainable financial position for the charity under the current climate and for the future.
• Offer decision support and help drive the current programme of initiatives to deliver services more efficiently and effectively as we come out of the pandemic.

What are we looking for?

We want to hear from passionate individuals, ideally with experience of trusteeship, governor roles, committee members or similar, who possess an understanding of the responsibilities of charity governance.

We are looking for someone who will share our commitment to providing an exceptional and expanding range of services to support patients and their families with vascular Ehlers-Danlos Syndrome including a focus on Support for patients and their families, Education for medical professionals and Research into the condition. 

What difference will you make?

The Trustee role is pivotal to the charity and the delivery of its future vision. We want applicants who are committed, engaged, passionate, will challenge, and question and deliver on their actions, who will ensure the charity continues to grow and thrive, serving the vEDS community at the heart of this charity, whilst embracing change.

What’s in it for the volunteer?

The chance to make a real difference to the lives of those we strive to support and for further professional and personal development. The opportunity to take Annabelle’s Challenge to it’s next level with a strong financial base on which to develop and grow the charity’s capabilities and services. Reasonable travel expenses and costs will be paid by the charity.

A bit about Annabelle’s Challenge?

Annabelle’s Challenge (‘AC’) was founded in 2013 by Jared Griffin (‘JG’), when his daughter Annabelle Griffin (‘AG’) aged 3 was diagnosed with a very rare genetic life-threatening disorder known as vEDS. VEDS causes easy bruising and veins, arteries and organs to be prone to rupture. Life expectancy average is reduced significantly. AC has c. 360 patients across the UK, and there are anticipated to be c. 740 people with vEDS in the UK. Prior to AC, vEDS patients, did not have a community nor a collective voice in terms of I) promoting awareness; ii) educating medical professionals, schools, families and iii) driving research. The majority of individuals were looked after by their local GP/cardiologist, with a mixed experience in terms of quality of care, given many of whom would have little knowledge about vEDS.

Since its foundation the charity has grown from strength to strength, proud recipients of The Queen’s Award for Voluntary Service in 2018, holding the world’s first vEDS conference bringing together families with VEDS with medical professionals to spread awareness, holding quarterly regional support groups and providing patient support services, linking newly diagnosed vEDS patients into the two national NHS EDS teams (Sheffield and London), ensuring newly diagnosed VEDS patients receive the appropriate medical advice and support, and supporting children with vEDS and their schools. It has also worked with universities coordinating and funding research into a number of areas.

In summary Annabelle’s Challenge has achieved a significant amount with limited resources for the community and is highly valued and respected by vEDS patients, international vEDS charities, the two NHS EDS centers in the UK. 

Annabelle’s Challenge in August 2021 received a 3 year grant from The National Lottery to fund it’s VEDS Support Programme and securing the medium term financial sustainability of the charity. This, combined with a very active fundraising community means we have the resources to take the charity to the next phase of its strategy.

This is a fantastic opportunity to make a meaningful difference to this small charity and the community it serves.

Application Instructions

Please send a CV and covering letter outlining how your skills and experience that meets the requirements of the role to: admin@annabelleschallenge.org

Annabelle’s Challenge reserves the right to close this vacancy early if a large number of applications are received.

We will only contact those candidates shortlisted for interview via email; we aim to do this within 1 week of the closing date. If you do not receive the email, it will be that you have not been shortlisted on this occasion.

Applications to be received by Friday 28 April 2023

Interviews during May 2023

Role effective from June 2023

Annabelle's Challenge requests no contact from agencies.