Eu Rare Disease Project Liaison

5 maanden geleden

Nijmegen, Nederland Radboudumc Voltijd

1 year with prospect of extension **_Radboudumc is seeking an EU Rare Disease Project Liaison to strengthen its team. This role provides an exciting opportunity to contribute to the delivery of impactful actions at regional, national and EU level. The goal is to implement meaningful actions through tasks and deliverables, stated in a newly launched EU Funded project called JARDIN. The ambitious project aims to enhance the impact of the ERNs even further by addressing all aspects of their better integrations into healthcare systems in EU member states. This will include for example improving national governance, quality assurance models, patient pathways, information dissemination and data management with a specific emphasis on patients as well as the medical community._**

As the number of rare disease patients is small by definition, there is a pressing need for the joint analysis of patient data on natural disease history, genetic makeup, disease modifiers and treatment outcomes. However, the available data is fragmented across different care providers, registries, and countries, and cannot be used to their full potential because data get lost, are not associated with descriptive metadata, or miss essential details on the way they are produced. To fix that, the research community has adopted the FAIR principles, worldwide.

They say that data should be Findable, Accessible Interoperable, and ultimately Reusable. We believe that the FAIR data principles should be implemented to datasets with the potential to be linked to others and to be federated and analysed. To increase the FAIRness of data across the European Reference Networks and National Health Systems in member states, we are looking for an EU Rare Disease Project Liaison to join a consortium of partners and to coordinate all planned activities on behalf of Radboudumc.

**Tasks and responsibilities**
- Collaborate with Rare Disease European Reference Networks (ERNs), FAIRification stewards, and European registry initiatives and Joint Actions to ultimately organise and obtain national funding for ERNs sustainability and harmonise European rare disease data sharing and analysis.
- Ensure FAIR data principles adherence across the project Work Packages.
- Focus on controlling and monitoring project activities to ensure alignment of project goals at all levels. Collaborate with internal and external stakeholders, including consortium partners and governmental agencies.
- Maintain effective communication channels to address concerns and ensure project alignment with stakeholders' expectations.
- Ensure strict adherence to EU grant agreements, guidelines, and reporting requirements.
- Work with legal and compliance teams to address any regulatory issues.
- Prepare and submit regular progress reports to EU authorities and other relevant stakeholders.
- Provide accurate and timely information on project achievements and challenges.
- Conduct evaluations to assess the impact and effectiveness of the project.
- Represent the team at events and meetings related to the project.
- Raise awareness at national, regional, domain, and local levels about the importance of FAIR data.

At Radboud university medical center, you build on your future. We are committed to providing the best care, education, and research. And we are true to our word, because we help you develop and seize opportunities and give you the room to grow. As an employer, we believe that employees should feel vital and happy at work in all stages of life. We are also committed to creating a healthy and safe working environment. Our employment conditions contribute to that. What we offer:

- A gross monthly salary of between €3.514 and € 4.817 (scale 9) for full-time employment (36 hours per week). You will also receive an 8% vacation allowance, an 8.3% end-of-year bonus, and, depending on the position, an allowance of 47% to 72% for working irregular hours.
- Plenty of opportunities to develop yourself. For example, you can follow various courses via our online learning environment. A lot of attention will also be paid to your wellbeing and vitality. For instance, you can take advantage of:

- a 40% discount on gym membership at the Radboud Sports Center.
- the Company Support Team and a personal coach if you experience a life-changing event.
- a financially favorable option to work less through a generation scheme if you are approaching state retirement age.
- support with achieving a good work-life balance at every stage of your life. This includes advice and training (from ‘Millennial Dilemmas’ to ‘Your Career After 57’), activities at our own mindfulness center, and informal caregiving consultations if you have any questions about combining your work and caregiving tasks at home.
- 168 vacation hours per year based on a 36-hour working week. Want more vacation? You can buy additional vacation hours with your end-of-year bonus.
- 26 weeks of parental leave, of which 9 weeks are paid.

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