EU Rare Disease Project Liaison

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.
• Identify currrent barriers to rare disease data sharing and inventory the existing candidate solutions. Promote improving the integration of data management between National Health System and ERNs. Contribute to the development of recommendations ensuring the interoperability of data structures on local, regional and national and ERNs level.
• 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.

We think this role is for you if you are experienced in detailed planning, successful implementations, and completion of complex projects. You will work closely with multidisciplinary teams, various stakeholders, and governmental institutions to ensure that project objectives are met within the specified timeframes and project funding. You'll need to be able to maintain an overview of multiple overlapping activities and ensure that they are effectively aligned, accommodating shifting deadlines and changes of direction as required. Experienced in managing budgets and project plans, you will be confident in supporting the team of FAIR Data Stewards. Strong interpersonal skills and the ability to work flexibly in a dynamic, fast paced technical environment are essential.

The ideal candidate for this position has experience with the FAIR principles to meet the requirements and standards set for and from the scientific domain as well as by the organization. The Department of Medical BioSciences provides a stimulating medical environment with a European dimension, actively participating in an international network of experts who collaborate on best data stewarding practices for rare disease data.

In addition you possess the profile below:

• MSc or PhD in a relevant discipline (public health, medical informatics, data science, biology, bioinformatics, computer science, artificial intelligence)
• You endorse the FAIR principles and Open Science Ability to work in multidisciplinary teams.
• Proven experience in managing EU-funded projects.
• Strong understanding of EU regulations and grant management.
• Excellent writing and verbal communication in English (Dutch is a plus).
• Ambition to participate/present in (inter)national conferences/congresses, academic writing skills.

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 € 3.655 and € 5.010 (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.
• Extra-favorable leave conditions. For example, our short-term caregiving leave is not 2 but 4 weeks per year and even 12 weeks per year for partner and child.
• Pension accrual with the ABP Pension Fund. Radboud university medical center pays 70% of the pension contribution.
• Discount on the supplementary packages of two collective health insurance policies and on ten other types of insurance, from home insurance to legal assistance.
• A travel allowance via our Employment Conditions Selection Model and a working-from-home allowance of €2 per day.

The Department of Medical BioSciences focuses on basic and translational research in the medical biosciences, from molecules to humans, to better understand disease and health and improve diagnostics and treatment. The active group of data stewards in the department is committed to the reusability of data, tools, and services, and puts the FAIR (Findable, Accessible, Interpretable, Reusable) data principles into action.

You will be working in a newly launched EU funded project called JARDIN (Joint Action for the integration of ERNs into National Health Care systems). Any disease affecting fewer than five in 10,000 people in the EU is considered rare. These patients do not have access to diagnosis and high-quality treatment because their numbers are low. Radboudumc is one of the leading hospitals and research centres in the Netherlands with 39 highly specialised healthcare units for rare diseases. It has a prime role in a number of European Reference Networks (ERNs).

ERNs are virtual networks of networks connecting 4000 hospitals, 1,600 highly specialized health care units and patients. In 2017, the European Commission launched 24 ERNs with a range of thematic areas, from rare bone disorders and childhood cancers to rare neurological diseases.

Radboudumc
Radboud university medical center is a university medical center for patient care, scientific research, and education in Nijmegen. Radboud university medical center strives to be at the forefront of shaping the healthcare of the future. We do this in a person-centered and innovative way, and in close collaboration with our network. We want to have a significant impact on health and healthcare. We want to improve with each passing day, continuously working towards better healthcare, research, and education. And gaining a better understanding of how diseases arise and how we can prevent, treat, and cure them, day in and day out. This way, every patient always receives the best healthcare, now and in the future. Because that is why we do what we do.