Genetic Alliance UK is the national charity supporting all those affected by genetic conditions, rare and undiagnosed conditions, with a membership of over 200 voluntary organisations and patient groups. Our aim is to improve the lives of patients and families by ensuring that high quality healthcare is available to all who need it. We actively support research and innovation across the field of genetic medicine and rare diseases. We are the only group that provides a voice for patients and families with genetic, undiagnosed and rare conditions on a European, UK and devolved nation level.
Our knowledge and experience allows us to tackle difficult and complex subjects from a position that is inclusive across a wide range of genetic, rare and undiagnosed conditions. For children, adults and families affected by genetic conditions, regardless of the condition itself, many of the problems and barriers they face are the same.
In addition to supporting our members, Genetic Alliance UK also runs following long-term projects:
Rare Disease UK – a national campaign providing a united voice for the rare disease community. Working to raise the profile of rare diseases and to bring about positive change for individuals and families affected by rare diseases.
SWAN UK (Syndromes Without A Name) is the only UK based network providing information and support to families of children and young people who have undiagnosed genetic conditions.
About the role:
To carry out research into access to medicine pathways, and to manage the delivery of workshops and meetings with stakeholders, as part of the delivery of Genetic Alliance UK’s year-long ‘Resetting the Model’ project.
This project has been designed to give Genetic Alliance UK’s experienced policy, public affairs and communications teams the flexibility and space to deliver a new vision for access to rare disease medicines for the UK.
Our faulty system for decision-making on access to rare disease medicines is causing an inequality of availability of medicines for patients compared to other large European nations. The UK is behind Germany, France, Italy and Spain in terms of speed of decision making and number of medicines approved.
Around 3.5 million people in the UK will be affected by a rare disease at some point in their lives. There are more than 6,000 rare diseases, but only 200 of these have a licensed innovative medicine in Europe. We have fifteen pathways to assess treatments for a small fraction of a small patient cohort in the UK. They all work in different ways, and sometimes we have four separate decisions being made on the same treatment – not all of them reaching the same conclusion.
The ‘Resetting the Model’ project aims to change this.
- Organising regular ‘Resetting the Model’ project team meetings.
- Manage the delivery of workshops with external stakeholders, including:
- Identifying and prioritising attendees.
- Working with colleagues in the policy team to define the programme of the event.
- Arranging and booking venues.
- Participating in discussion.
- Recording findings of the workshops.
- Preparation of specific briefings on topics relevant to access to rare disease medicines.
- Desk research on topics within the scope of the project.
- Interviewing stakeholders.
- Arranging and attending meetings with officials to discuss the work of the project.
- Collaboration with the policy team on the production of the final report of the project.
- Collaboration with the public affairs and communications teams to ensure clarity of message and accurate dissemination of findings.
Education and qualifications
- Graduate or equivalent experience.
- Good level of IT literacy, including a good knowledge of Microsoft Office applications,
Essential qualities, skills and experience
- Excellent written and verbal communication skills.
- Proven ability to write clear and logical documents, with strong attention to detail.
- Ability to work in a team as well as to use individual initiative and judgement.
- A can-do attitude, with enthusiasm and creativity.
- Excellent organisational skills and ability to plan ahead, keep records, manage deadlines, prioritise workload and maximise the use of time.
- An ability to adapt writing style for a range of audiences.
- Experience of health or medical research policy work.
- Appreciation of current issues in genetics and healthcare and their impact on patients and families.
- A commitment to the aims and objectives of Genetic Alliance UK.
Desirable qualities, skills and experience
- Knowledge of the NHS environment.
- Knowledge of medical genetics.
- Experience of policy work at the devolved nation and / or European level.
- Experience of the voluntary sector.
- Working occasional evenings and weekends.
- Willingness to occasionally travel in the UK and Europe.
How to apply:
Your application should include your CV and a cover letter addressed to Nick Meade and explaining why you would like this job and why you are a suitable candidate. Both of these should be attachments to your email and as PDF or Microsoft Word format, please include your name on the document titles eg ‘JohnSmithcv.pdf’ and ‘JohnSmithcoverletter.pdf’.
Interviews will be held on Monday 12 March 2018, during office hours.