About DDF 

Duchenne Data Foundation is a worldwide collaboration in order to enhance the understanding of the course of Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients. In this context, it undertakes infrastructure projects and participates in research projects that concern DMD/BMD.


Oversee data flows within the organization and enforce internal rules as defined by corresponding data governance requirements. Address data quality issues and ensure that end-users adhere to specified data standards to promote effective primary and secondary use of data. Collaborate with data architects and AI experts for the structuring and analysis of data. Interact with data owners and external data stewards, in the context of collaborative projects. 


  • Implement the policies and standards as defined by data governance requirements;
  • Control the quality of the data gathered, stored and used by the organization;
  • Create and implement rules, processes and procedures for effective data management (data collection, access storage, use, sharing, etc.);
  • Responsible for data analysis, data profiling, data modeling, and data mapping capabilities;
  • Review and govern data queries and DML (data manipulation language); 
  • Define standards and best practices for data analysis (Python), modeling (RML), queries (standards as SQL and SPARQL), and data interoperability (HL7 and FHIR); 
  • Understand end-to-end data flows and identify data dependencies in support of delivery, release, and change management;
  • Develop and maintain enterprise data dictionary, aligning internal and external data assets;
  • Map ontologies and link RDF triple stores;
  • Solve data related issues and communicate solutions.

Required qualifications

  • University Degree / MSc in a relevant discipline (data management, data science, biology, bioinformatics, computer science, artificial intelligence, public health, biomedicine);  
  • Related work experience in the healthcare domain;
  • Experience in the design of data and metadata models based on existing ontologies and standards, including RDF;
  • Experience in managing data from different sources;
  • Fluency in English (written and oral); additional languages are an advantage. 

Desired Qualifications

  • Experience with data management or research for rare diseases;  
  • Experience with e-health initiatives and protocols: e.g., HL7, FHIR;
  • Knowledge of FAIR data principles.

Working Conditions

  • Participation in innovative large-scale projects at European and global scale.
  • Participation in initiatives with highly positive social impact.
  • Collaboration with an international network of collaborators and stakeholders. 
  • Multidisciplinary work environment identifying strategic alternatives and project approaches to needs relating to healthcare data. 
  • Dynamic work environment, providing opportunities for personal and professional development.
  • DDF is based in the Netherlands and remote work is the standard. If necessary, availability to travel is required. 

For more information about the position and for applications, please send your CV to Mrs. Elvina Sakellariou ([email protected]).