Communications Project Manager

Salary: £20,000

Status: Full time

Reports to: AKU Chairman

Based: Cambridge, with willingness to travel within UK frequently

Start date: September

About the Alkaptonuria Society

The Alkaptonuria Society is a small medical charity that funds research into Alkaptonuria, a rare genetic disease, and supports patients with the illness. Set up in 2003, it works in close partnership with the University of Liverpool, where it supports a research team thanks to funding from the Big Lottery Fund. The Alkaptonuria Society’s board of trustees is made up of patients, carers and doctors.

We are setting up a small office in Cambridge, where this position will be based.

Alkaptonuria (AKU for short) is a rare genetic disorder caused by a missing enzyme, leading to the accumulation of homogentisic acid at 2,000 times the normal rate. This generates damage to cartilage and bone, leading to severe disability as life progresses. It is known as ‘black bone disease’ because of the way it discolours bone. It was the first genetic disease ever discovered, in 1901, but there is still no cure.

Please see and for more information.

About this position

This is aposition funded by the National Lottery through the Big Lottery Fund as part of a medical research project. The post holder provides essential support to the Alkaptonuria Society in communicating the learning from existing and ongoing medical research to patients, doctors and funding authorities through events, publications, website and face to face communications. (S)he sets up and manages communication, administration, funding and eventsto ensure timely and cost efficient delivery, raising the profile of Alkaptonuria in the medical, patient and funding arenas. The postholder will have strong communication, organisation and administration skills in order to support the activities, as well as a good understanding of medical science. (S)he will be working closely with the Chairman of the society in order to drive the objectives.

Key ActivitiesFirst Year Objectives

Medical Research Project Communication

  • Presenting AKU work to MPs, peers, journalists, patients, doctors, other patient groups, trusts and foundations.
  • Liaising with international medical research partners to share and gather information from all parties
  • Updating the medical research website regularly
  • Researching academic journals for publications – liaising with editors and updating researchers regarding publication opportunities and deadlines
  • Setting up and managing regular meetings with project boards, European partners and trustees

Key objective for the first year:communicate the results of the research effectively with doctors, patients, academic journals, policy makers, media, funders, and other stakeholders using a range of communications such as articles, email updates, meetings, websites, etc. Success will be measured through feedback from different stakeholders and coverage obtained.

Patient & Doctor Communications Projects

  • Organising an annual conference for researchers and patients
  • Acting as a point of contact for and communicating to patients and doctors via email, website, telephone and post, including the production of a regular newsletter
  • Online marketing and PR, including updating websites and the AKU Society website, and dealing with the media
  • Developing projects to identify new patients
  • Interviewing patients and doctors to assess their needs and level of knowledge
  • Representing the AKU Society at network events and forums
  • Attending medical conferences and representing the AKU Society and research teams

Key objective for the first year: Organise a medical and patients conference in Cambridge: this will include an academic conference bringing together leading medical researchers from the UK and Europe/USA to discuss their findings on Alkaptonuria and agree a way forward.

Project and Funding Administration

  • Being the key point of contact with the Big Lottery Fund.
  • Providing regular reports and updates to the Big Lottery Fund.
  • Financial Management – monitoring the AKU Society budget and providing regular reports
  • Management of the patient database.
  • Identifying potential funding routes, starting the initial drafts and coordinating the applications
  • Producing documentation to help lobby government and agencies to increase the profile of the AKU Society.
  • Providing administration support to the medical research teams and the Alkaptonuria Society

Key objective for the first year: track financial, medical and academic progress in order to report back to the Big Lottery Fund, the Research Project Board and the Alkaptonuria Society about the progress of the project towards its outcomes.

Person Specification – qualifications/knowledge/experience

Essential

  • Understanding of medical research terms & processes
  • Experience of managing communications projects
  • Experience of financial management & reporting
  • Excellent writing skills
  • Research skills
  • Administration skills

Desirable

  • Experience of website and internet communications
  • Understanding/experience of charity funding processes
  • Journalistic experience
  • Science degree

The AKU Society will support individuals who are able to show strong essential skills and passion to develop the desirable skills.

Competencies

Communicating /
  • Speaks & writes clearly, succinctly, accurately & structured
  • Speaks & writes convincingly, in an engaging & expressive manner
  • Avoids the unnecessary use of jargon or complicated language
  • Structures information to meet the needs of the intended audience.

Planning & Organising /
  • Plans activities projects in advance, allowing for changing circumstances
  • Manages time effectively
  • Identifies & organises resources needed to accomplish tasks
  • Monitors performance against deadlines & milestones

Relating & Networking /
  • Establishes good relationships with colleagues, patients & doctors
  • Builds a wide & effective network of contacts – internal & external
  • Relates well to people at all levels
  • Proactively builds relationships

Adapting & Responding to Change /
  • Adapts to changing circumstances
  • Maintains motivation when working alone
  • Adapts interpersonal style to suit different people or situations
  • Deals with ambiguity, making positive use of the opportunities it presents

Learning & Researching /
  • Rapidly learns new tasks
  • Gathers comprehensive information to support decisions
  • Demonstrates a rapid understanding of new information
  • Manages knowledge (collects, classifies & disseminates knowledge)

Applying expertise & technology /
  • Develops job knowledge & expertise through continual professional development
  • Shares expertise & knowledge with others
  • Uses technology to achieve work objectives

To apply, please send a covering letter and a CV to Dr Nicolas Sireau, Chairman, at:

AKU Society website: