Admin Assistant AKU Society

Admin Assistant – AKU Society

Salary: £18,000

Status: Full time, permanent contract
Reports to:Patient Support Manager

Based: Cambridge, with willingness to travel within UK frequently

Hours:37.5/week

Start date: October 2015

About the AKU Society

The AKU Society is a charity that supports patients with alkaptonuria (AKU for short), a rare genetic disease. Set up in 2003 by a patient and a doctor, it works in close partnership with the Royal Liverpool University Hospital and the University of Liverpool. The AKU Society’s board of trustees is made up of patients, carers and doctors. We have a small office in Cambridge’s AdviceHub, where this position will be based alongside the rest of the AKU Society team.

AKU 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.

AKU patients are often severely isolated, marginalised and depressed because the rarity of their condition means that they are poorly cared for by the medical profession and statutory services, who do not understand their condition. AKU patients suffer from lack of information about their illness and how to care for it and find it difficult to access treatments. We know of 81 AKU patients in the UK and 1,000 worldwide.

We work with the Royal Liverpool University Hospital to run the National AKU Centre. This is a service for AKU patients from England and Scotland where they receive a wide range of assessments and access to treatment. The AKU Society provides the patient support for this service.

In November 2012, we launched international clinical trials of a potential new medication to treat AKU. This drug, called nitisinone, will be studied over 6 years to assess its effects on slowing the progression of disease. The trials recruit patients from across Europe into three clinical centres in Liverpool (UK), Paris (France) and Piestany (Slovakia). The AKU Society is a key part of the studies, leading on patient recruitment, patient support and dissemination.

Please see the AKU Society’s website at and the DevelopAKUre website at for more information.

About this position

This is an admin focused role, with an emphasis on providing reliable administrative support to our patient work in the UK and Europe. Applicants will need to develop a good understanding of the disease. Applicants should expect some patient contact. Training will be available from the AKU Society to develop skills in promising applicants.

Key Activities

Administration of patient retention, coordination and support

• Liaise with the Royal Liverpool University Hospital (RLUH) to organise patient travel, and other logistics
• Support RLUH with patient communication
• Troubleshoot logistical issues as they arise and work with the AKU Society and external partners to find solutions
• Produceand distributeaccurate information about the National AKU Centre and the DevelopAKUre clinical trials
• Accompany patients at the National AKU Centre and the UK clinical trial site in Liverpool as required (may require overnight stay)

Coordinating dissemination of the projects and its results

• Collect patient-related data for scientific reports
• Disseminate project results to patients and other interested parties
• Plan, organise and run annual Patient Workshops and Scientific Conferences (with input from other staff members)
• Disseminate updateson the DevelopAKUre websites and blogs

Reporting and Administration

• Provide administrative support to the AKU Society (for example, booking staff and patient travel and accommodation)
• Provide regular reports and updates to the AKU Society
• Help collate the relevant information for reporting to the European Commission
• Assist with administrative support to other AKU Society projects
• Manage AKU Society office supplies, as well as online and offline filing systems

Person Specification – qualifications/knowledge/experience

Essential

• Basic understanding of medical research terms & processes
• Good customer service skills
• Good written and verbal communication skills
• Interpersonal skills, particularly the ability to empathise
• Administration skills, including good IT literacy, and experience of website management

Desirable

• Understanding of international clinical trials
• Experience of working in healthcare and related areas
• Working knowledge of one or several other European languages
• Experience of social media for business or willingness to learn

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

Competencies

• 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.

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

• 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

• 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

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

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

AKU Society website:
DevelopAKUre microsite: