Business Development & Partnerships Manager

About Action for ME

Action for ME is the only charity in the UK providing support including healthcare to people of all ages affected by ME. The charity was founded by Sue Finlay in 1987 and since then has been taking holistic approach so we can make an impact on multiple fronts - from amplifying the voices of people affected by ME in Government and leading on breakthrough research to providing lifeline support and unique healthcare services on a daily basis.

Myalgic Encephalomyelitis (ME) sometimes referred to and diagnosed as Chronic Fatigue Syndrome (CFS) is a chronic fluctuating disease causing symptoms such as post-exertional malaise (PEM) sleep problems problems with thinking and memory (brain fog) pain and crushing fatigue. There are an estimated 1.3 million people living with ME or ME-like symptoms including PEM in the UK alone.

Even in its so-called mildest form ME can have a significant impact on an individuals life and not just on their health. A lack of understanding and awareness about ME means patients can experience disbelief and even discrimination from friends family health and social care professionals employers and teachers.

For the first time there is an increased awareness of post viral illness because of the Covid -19 pandemic. After decades of neglect this offers Action for ME an opportunity to accelerate our work for people with ME in a way we have never been able to do before.

Job Purpose

This is a unique and exciting opportunity to accelerate research and transform the lives of millions of people with ME and Long Covid. We are seeking a Business Development & Partnerships Manager for Sequence ME&Long Covid a new researchinitiativedesigned to explore theroot causesofMyalgicEncephalomyelitis (ME) and Long Covid usinglarge-scalelong-read whole-genome sequencing.

By developing and deliveringstrategic partnershipsand funding strategy you will work as part ofteam committed to making change happen through whole genome sequencing (WGS) of 18000 people the largest ever WGS in the world of any disease.

Sequence ME & Long Covid aims to pinpoint potential targets for treatment and bring us closer to meaningful clinical by Action for ME the partnership includesthe University of EdinburghOxford Nanopore Technology(who will provide the long-read technology)the European Bioinformatics Institute (EMBL-EBI)and people with lived experience of MEwho have joined to seek fundingforSequenceME and Long multidisciplinary team brings world-classexpertisein genomics bioinformaticsco-productionand ME research.

If you have experience of securing significant funding or investment for research producing highquality communication materials and a commitment to coproduction and lived experience involvement in research or service design we would like to hear from you.

Key Responsibilities

Partnerships and Business Development

• Develop and deliver a business development strategy for theSequence ME & Long Covid (SMELC) study to secure6mfundingfor the first phase of scientific research (whole genome sequencing of 9000 already secured samples from people with ME).

• Lead on high level applications for funding to high potential strategicpartners andresearch funding partners.

• Work with the current partnership to mobilise the study and ensure effective plans and governance are in place.

• Maintain and manage a pipeline of partnership opportunities.

Communications and Engagement

• Contribute toengagement andcommunications activitiesto market Sequence MEand Long Covid effectively.

• Create materials to support effective engagement with potential and current partners.

• As part of business and partnership development develop pitch decks and proposals tailored to different audiences.

• Support fundraising efforts by contributing tocommunicationsmaterials for philanthropy and major donor engagement.

• Ensure that people with lived experience remain at the heart of planning and delivery.

Other Key Accountabilities

• To attend Action for ME meetings and courses asrequired.

• To work collaboratively with Action for ME and the study teamcolleagues across all teams.

• Keepup to datewith the latest research best practice andcomply withrelevant legislation and regulatory requirements working within the organisations policies and procedures and ensuring that good practice isobservedat all times.

• Maintain confidentiality in line with relevant policy and procedure ensuring data consent processes have been followed in relation to data protection.

• Positivelypromote the work and activities of Action for MEat all times.

• Undertake any other reasonable activity in line with the responsibilities of the post as requested by the Line Manager or any member of the Management Team.

How to apply:

The full recruitment pack can be found here: Business Development & Partnerships Manager Application Pack

Applications should be submitted via our recruitment website here: Along with your CV your cover letter should in no more than two A4 pages explain your reason(s) for applying for this roleand how you fit all aspects of the person specification set out above.

Please ensure you provide specific detail on how you meet the following person specification criteria:

• Proventrack recordof developing and delivering successful partnership or business development strategies ideally within research health life sciences or complex multistakeholderenvironments.

• Demonstrable experience securing significant funding or investment (six orseven figurelevel) from strategic partners philanthropic funders or major donors.

• Experience managing a pipeline of partnership opportunities from identification through to negotiation and stewardship.

• Strong proven experience and skills producing highquality written materials such as pitch decks proposals briefing documents andpartner facingcommunications.

• Ability to translate complex scientific or technical information into clear engaging audience-appropriate content.

• Relationship-driven with demonstrable experience working collaboratively across multidisciplinary teams ideally involving researchers technical specialists and external partners.

• Understanding of the importance of coproduction and lived experience involvement in research or service design and ability to work effective with all partners including those with livedexperience productionand lived experience involvement in research or service design.

Strong applicantswill list each person specification bullet point related to experience skills and behavioursand provide evidence of how they meet each of these criteria. If you are applying on a job-share basis please indicate your preferred working hours per week in your application.

We are proud to be a member of the Disability Confident scheme and offer a guaranteed interview to applicants who can clearly demonstrate via their written application that they meet all essential criteria set out in the person specification.

Should you have any questions about the role or require any reasonable adjustments to the recruitment process please dont hesitate to contact us on

Please note that any applications sent directly to any Action for ME mailbox will not be considered.