|Specific Location||Cystinosis Ireland does not have a physical office. Staff and volunteers conduct business primarily through email, telephone calls and online meetings. In the absence of restrictions caused by Covid 19, Cystinosis Ireland normally holds a number of in-person Board and Research Group meetings during the year. These meetings take place in Dublin, in the evening approximately once per month.|
Cystinosis Ireland is recruiting for a Research Manager. Cystinosis Ireland is a patient-led charity with a track record in driving research into cystinosis, an ultra-rare disease, both nationally and internationally. We wish to recruit someone who is highly organised, motivated and capable of working on their own initiative to work closely with Cystinosis Ireland’s Research Group and Board.
About Cystinosis Ireland
Cystinosis Ireland is an All-Ireland patient-led charity with a successful track record investing in research into the ultra-rare disease, cystinosis. We play a cutting-edge role nationally and internationally in ensuring research has impact for patients and are one of the main funders of cystinosis research world-wide. We maintain strong international networks among researchers, clinicians and patient organisations. We support families and those living with cystinosis in Ireland.
We seek a very organised person, highly motivated and capable of working on their own initiative. The role involves working closely with the Cystinosis Ireland Research Working Group and Cystinosis Ireland’s Board members, all of whom are volunteers.
The role will involve working closely with researchers in Ireland and internationally to assist them in driving forward research relevant to Cystinosis Ireland and the cystinosis community globally.
KEY RESPONSIBILITIES INCLUDE
- Managing on a day-to-day basis the research investment programme of Cystinosis Ireland
- Issuing research funding calls and commissioning of research projects. Undertaking and managing the peer review process and preparing Research Working Group proposals for Board review
- Managing all operational aspects of the research process including issuance of contracts, overseeing grant payments and reporting from grantees
- Managing the HRCI-HRB Joint Funding Scheme application process for Cystinosis Ireland
- Working with researchers on applicant eligibility, proposal development, compliance and feedback on research funding proposals
- Acting as point of contact for researchers, patient groups, and clinicians
- Building and sustaining relationships with national and international research stakeholders including academic and clinical researchers, patient networks, research funders and other relevant stakeholders
- Working with all stakeholders to ensure patient impact from research
- Developing and implementing research strategy and policy along with Chair of Research Group and members
- Ensuring best practice governance around all aspects of the research process
- Working closely with Chair of Research Group and its members
- Reporting to the Cystinosis Ireland Board on research activities
- Arranging and attending Research Group Meetings (Zoom usually), taking minutes and follow up. Preparing Research Reports for Board meetings
- Attending Cystinosis Ireland Board meetings and other meetings as required with attendant follow up
- Assist in organising the Annual Dublin Cystinosis Workshop and involvement in other relevant cystinosis conferences/events as required
Advocacy and PPI
- Assisting in advocacy relating to health research e.g. campaigning for a patient registry, evidence-based clinical guidelines, increased PPI, an improved health research environment etc
- Assisting in lobbying and advocacy campaigns relevant to Cystinosis Ireland in conjunction with Chair of Research Group
- Developing and promoting Public and Patient Involvement (PPI) in Cystinosis Ireland’s research activities with patients and the public and with researchers
- Contributing to and assisting the work of Cystinosis Ireland as part of the worldwide Cystinosis Community Advisory Board and the umbrella organisation Cystinosis Network Europe
- Staying updated on national and international cystinosis research
- Attending relevant national and international research and other meetings on behalf of Cystinosis Ireland, maintaining records of contacts and meetings
- Maintaining and updating the Cystinosis Ireland research webpages
- Maintaining the Cystinosis Ireland research funding and contacts database
- Managing and monitoring research email, dealing with research communications as appropriate
REQUIRED KNOWLEDGE / EXPERIENCE
- Degree level qualification (minimum) or equivalent. While a biosciences/biomedical science or other health sciences qualification is desirable, Cystinosis Ireland is open to considering applications from anyone with relevant experience/knowledge. Therefore, a person with non-scientific qualifications may be suitable.
- Previous experience in a research administrative, development or management role that requires similar skills.
- Knowledge of the Irish health research environment desirable
- Understanding rare disease research environment desirable
- Knowledge of European funding opportunities desirable
- This role reports to the Chair of Cystinosis Ireland Research Working Group.
WORKING FROM HOME
- Cystinosis Ireland does not have a physical office. Staff and volunteers conduct business primarily through email, telephone calls and online meetings.
- In the absence of restrictions caused by Covid 19, Cystinosis Ireland normally holds a number of in-person Board and Research Group meetings during the year. These meetings take place in Dublin, in the evening approximately once per month.
TERMS AND CONDITIONS
- This role is open to full-time, part-time or other flexible options
- Flexibility to undertake some travel and occasional work outside standard hours is a requirement
- Commensurate with experience
- Closing date: April 9th 2021
- Please send your cover letter and CV to: [email protected].
- Please outline in your CV or cover letter how you meet the essential and desirable skills.
- Closing date: April 9th 2021