The Sickle Cell Society is looking for a Genomics and Sickle Cell Partnership Manager to deliver the Society’s partnership programme with Genomics England, in particular a Priority Setting Partnership and Exercise.

Post:  Genomics and Sickle Cell Partnership Manager

Base:  Flexible, at home, at Sickle Cell Society Office, 54-56 Station Road, London NW10 4UA and at Genomics England office 1 Canada Square, Canary Wharf London.

Reports to: Chief Executive with close relationship to Community Manager for Diverse Data at Genomics England

Responsible for: No direct reports

Working Hours: Part-time (21 hours per week) Monday-Friday, flexible

Salary: £27,000 – £30,000 pro rata

Contract: 18 months

Job Purpose

To coordinate and ensure the successful delivery of a partnership programme between Sickle Cell Society and Genomics England. This includes working with the James Lind Alliance to deliver a Priority Setting Exercise for future genomics research on Sickle Cell.

About the Sickle Cell Society:

The Sickle Cell Society (SCS) is the only national charity in the UK that supports and represents people affected by a sickle cell disorder. We provide information, advice and support to enable and empower individuals and families to improve their overall quality of life. Approximately 15,000 people in the UK have a sickle cell disorder. These inherited conditions predominantly affect people of Black African and Black Caribbean heritage; and to a lesser extent people of Mediterranean, Middle Eastern, South Asian and Central/South American heritage. We assist and enable people living with SCD to realise their full potential whilst successfully managing the challenges they face in living with this potentially life-limiting condition.

We are a small, friendly and close-knit team of 14 skilled and highly committed staff (9 part-time / 5 full-time) and approximately 30 active volunteers.

 

Key responsibilities and duties

Support the delivery of a Priority Setting Partnership project with Sickle Cell Society and Genomics England:

• Organising teleconferences, Steering Group meetings and workshops for PSE and wider partnership activities
• Recruitment of individuals attending workshops: members of public, patients, experts, etc.
• Writing and following up on action notes
• Managing communications with stakeholders and the wider community e.g., liaise with Comms Leads at GEL and SCS to create relevant content
• Prepare any further supporting materials needed for meetings
• Communication activity such as preparing a website, communicating via e.g., Twitter
• Support producing and publicising the survey and downloading the survey results ready for the Information Specialist for PSP

 

Skills and Experience

 

• Engagement, project management or similar proven experience of at least 3 years in a similar role
• Experience of delivering on successful communications and health engagement projects
• Strong and enthusiastic communicator who is comfortable liaising with people at all levels
• Experience of co-ordinating and writing reports
• Eye for detail and understanding of developing powerful and engaging communications
• Excellent IT skills across a wide range of channels including website content management platforms, Microsoft, survey platforms, social media tools, graphic design, video editing and experience of Content Management Systems
• A strong team player who is also self-motivated with the initiative to identify opportunities for campaigning and engagement
• Ability to multi-task, meet deadlines and add value, develop in the role
• An interest in health research, rare conditions and genomics

 

To Apply

Please complete our Application Form and send it along with your CV to info@sicklecellsociety.org before the closing date.

Please note that applicants must reside in the UK.

Closing date for applications:  Friday 30 June 2023

Interview date: Thursday 27 July 2023

Secondments from other organisations will be welcomed.

 

Additional Notes:

• Please make sure that you demonstrate how you are suitable for this role in your application by referring to the person specification.
• Please note that we do not accept CVs and all applicants must reside in the UK.
• This post will require a Disclosure and Barring Service (DBS) check at Enhanced Level.

About the Sickle Cell Society

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

 

 

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Job Description and Person Specification: Genomics and Sickle Cell Partnership Manager

Application Form: Download the Application Form here 

Equal Opportunities Form: Download and complete our Equal Opportunities Form here