Newcastle Brc Rare Disease Coordinator

2 weeks ago

Newcastle upon Tyne, United Kingdom Newcastle University Full time

**Salary**: £28,929 to £29,762 with progression to £32,411 per annum

Newcastle University is a great place to work, with excellent benefits. We have a generous holiday package; plus the opportunity to buy more, great pension schemes and a number of health and wellbeing initiatives to support you.

**Closing Date**: 02 June 2023

The Role

We are looking for a highly motivated and capable individual to support our work in rare disease across Newcastle University. We recently commenced a 5-year grant for a Newcastle Biomedical Research Centre (BRC), and we are looking for someone to drive forwards activities relating to rare disease research across the Themes and disease areas which make up this BRC. ‘Rare diseases’ as a term encompasses a very broad group of 7-8000 distinct conditions, which tend to be quite complex but are typically accompanied by poor understanding and very limited treatment options. More research is required to address the challenges posed by rare disease, particularly as 1 in 18 of us is ultimately afflicted by a rare disease of one kind or another.

You will help to make a real difference for patients, by working across the BRC and our dynamic Newcastle Centre for Rare Disease research, liaising closely with the leads of the Centre and working alongside our supportive project management team. You will take responsibility for co-creating and implementing a programme of activities to improve rare disease research at Newcastle, which will include organising workshops and research events, engaging early career researchers, identifying new funding opportunities, and generally encouraging cross-rare-disease collaboration between different research groups, to help reduce silos.

You will be physically based within the John Walton Muscular Dystrophy Research Centre, which focuses day to day on translational research in neuromuscular diseases (engaging around 90 team members) but which for over a decade has also hosted teams dedicated to improving care and research for any and all people living with a rare disease, of any kind. You will work across the Newcastle BRC and the Newcastle University Centre of Research Excellence in Rare Disease.

This part time post (0.6 FTE) is offered on a fixed term basis until 30 November 2027.

Key Accountabilities
Act as the main point of contact and liaison between the BRC Theme and the RD NUCoRE at Newcastle for all synergistic RD activities
Proactively and independently provide suggestions and advice on Rare disease activities and cross university/ Trust opportunities. This involves working with NUCoRE members, identifying opportunities for research collaborations, providing recommendations and suggestions on how align work
Take full responsibility for organising research workshops and sandpits (including a focus on reaching Early Career Researchers) to support new research collaborations and cross rare disease working, This will include logístical planning and delivery of the workshops including producing a full report
Include BRC-focused activities to the workplan of the RD NUCoRE, aligning and updating all tasks relating to consolidating and expanding rare disease research. This will entail working collaboratively with internal and external partners including patient organisations, clinicians, academics and commercial partners, gathering feedback and making updates to the workplan accordingly
Organise and take part in internal and external activities and events relating to the NUCoRE programme of work including regular conference calls and face to face meetings between members, preparing agendas, taking minutes and taking responsibility for action points and following up outstanding items relating to identified tasks and actions
Monitor and collate PPIE activity relevant to rare disease across all BRC Themes, and support patient and public outreach events (particularly around Rare Disease Day), including providing budget management support to ensure that finances are appropriately and efficiently managed
Support and work collaboratively with the Rare Disease Policy Manager and NUCoRE leads to ensure the effective running of the RD NUCoRE, and support policy-focused activity for rare disease in the John Walton Muscular Dystrophy Research Centre
Research, collate and organise data and information for inclusion in reporting to funders (BRC), highlighting and prioritising any issues and suggesting solutions
To provide administrative support to the BRC Theme and RD NUCoRE when needed and directed by line manager
Take responsibility for identifying own learning needs
Other duties including national and international travel at potentially short notice as required

The Person (Essential)

Knowledge, Skills and Experience
Excellent organisational skills
Excellent written and verbal communication skills including report writing
Independent problem solving skills
Proven project management skills
Ability to prioritise key tasks, meet deadlines and to manage

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