Current Vacancies
Chair of the Steering / PPIE Group
Annabelle’s Challenge is currently recruiting for a volunteer from within the vEDS community to join the VEDS Steering Group as chairperson.
The applicant must be a UK member diagnosed with vEDS aged over 16 and ideally with experience of the role of a chairperson, but not essential.
The Steering / PPIE Group help to shape the future of the charity as it continues to grow providing support, guidance and oversight of progress of all community based projects including events and research.
The group is made up of volunteers who are directly affected by vascular EDS including patients, parents and carers. The team also includes genetic counsellors from the NHS EDS National Diagnostic Service from Sheffield and London.
Steering / PPIE Group aims:
• Bring people touched by vEDS together and build strong relationships in and across our community.
• Speak to people and listen to what they have to say in our vEDS community.
• Commitment to equalities and inclusion. Membership of the steering / PPIE group should be representative of all stakeholders.
• A willingness to speak their mind yet be respectful of others opinions.
• Active inclusion in the design and decision making in all aspects that affect and ultimately benefit our community including conferences, events, volunteers and research enabling our community to have a stronger voice.
• Enable more people diagnosed with vEDS to fulfil their potential by working to address issues at the earliest possible stage through our VEDS Support Programme.
• To devote the necessary time and effort to be an effective committee with meetings in person or via teleconference call/virtual meeting.
• Meetings to be formally chaired and minutes taken in order to capture necessary actions. Timely distribution of minutes will enable full engagement.
• Identify instances where formation of an appropriate working group would be beneficial.
• Liaise with the Medical Advisory Board to ensure medical accuracy.
Closing date for applications is 5pm Friday 27th February 2026.
To be considered for the role please register your interest using the form below:
