We are currently looking for an Admin and Research Officer for Cystinosis Ireland.

Cystinosis Ireland is an ambitious patient-led charity with a hugely successful track record in driving forward research into the ultra-rare disease, cystinosis. We are playing a cutting-edge role nationally and internationally in ensuring that research has impact for patients and we are one of the main funders of cystinosis research world-wide. We have strong international networks among researchers, patients and patient organisations. Equal to this work, we support families and those living with cystinosis in Ireland, north and south.

Fundraising is also a core activity of our charity. We are looking for a highly organised person, capable of working on their one initiative, a personable individual with the skills to make an impact on behalf of people with cystinosis. The role involves working closely with the Executive Board members, who are all volunteers, but particularly the Executive members running Research, Family Support and Fundraising.

Salary: Depending on experience
Hours: Full-time, part-time or other flexible options considered
Location: Dublin

Main Duties and Responsibilities

Research Duties

  • Working closely with Chair of Research Working Group and its members
  • Managing and supporting ongoing and future research projects
  • Arranging and attending Research Group Meetings (Skype usually), taking minutes and follow up. Preparing Research Report for Executive Board meetings
  • Managing and monitoring research email, dealing with communications as appropriate
  • Acting as point of contact between researchers, patients, clinicians and others and supporting the development of research networks
  • Assisting with facilitating patient involvement in cystinosis research
  • Assisting with identifying sources of funding and contributing to securing funds for research in conjunction with Research Working Group
  • Assisting in lobbying and advocating for improved treatments, clinical trials and increased research investment in conjunction with Chair of Research Group
  • Working on research strategy and policy along with Chair of Research Group and members


  • Managing and monitoring all email, social media and traditional media platforms
  • Organising and attending board meeting with relevant follow up
  • Attending national and international meetings on behalf of Cystinosis Ireland, maintaining records of contacts and meeting
  • Assisting and supporting all aspects of the organisation which includes research, family support, fundraising, finance and governance
  • Participating in the development and implementation of Cystinosis Ireland strategy
  • Representing Cystinosis Ireland within relevant umbrella groups and organisations
  • Assisting in the organisation of Cystinosis Ireland conferences and events

Required Knowledge/Experience


  • Strong inter-personal skills
  • Extremely organised
  • Self-motivated, highly capable of working independently and with a strong work ethic
  • Excellent verbal and written communication skills
  • Qualification or knowledge of the field of biomedical sciences, or equivalent OR relevant experience/knowledge that would help to develop skills and ability to work with Research Working Group. Therefore, a person with non-scientific qualifications may be suitable
  • Strong IT skills and working knowledge of Microsoft Office essential
  • Flexibility to attend some evening meetings in person and/or by Skype


  • Some knowledge of the health research environment desirable
  • Some flexibility to travel if required

If you’re interested in this role please email your CV to: mail@cystinosis.ie

Closing date: Friday 1 st December 2017