EJP RD Resource Finder: a “one stop shop” for rare disease researchers

Sunday, 6 June 2021

Virtual mindmap shows the way through a diverse network of research options for Rare Diseases

The European Joint Programme on Rare Diseases (EJP RD), coordinating 130 institutions from 35 countries, is the largest international network of activities to fight the more than 7,000 known rare diseases. Launched by the European Commission in 2019, the programme´s vital goal is to create a comprehensive, sustainable European and worldwide “rare diseases ecosystem” - allowing a virtuous circle between research, care and medical innovation.

A major topic in this ecosystem is to coordinate open access to data and services for many partners in basic and medical research. This will be possible through a common EJP RD virtual platform which is currently under development.

In the meantime, EJP RD’s Resource Finder helps scientific partners to find their way through the vast number of existing research data and services. As an interactive mindmap on https://resourcemap.ejprarediseases.org/#/, the Resource Finder is available 24/7 to all scientists interested in accelerating innovation in RD research. The different resources are grouped into categories and represented as 11 `nodes´ in the mindmap.

Under “ANIMAL MODELS AND CELL LINES”, users find the direct link to the INFRAFRONTIER website. As the European Research Infrastructure for generating, phenotyping and archiving genetically modified mouse and rat models, INFRAFRONTIER is ideally suited to support EJP RD´s scientific community with these advanced tools. Around 80 per cent of rare diseases are based on genetic causes. Therefore, functional genetics research is a crucial resource for developing innovative treatment and prevention methods for many rare diseases.

INFRAFRONTIER is an active partner in EJP RD from its inception. Even back in December 2018, Daria Julkowska (right), the central coordinator of the Paris-based programme, introduced the basic aims and activities of the new EC programme to the global audience of the INFRAFRONTIER Conference 2018 in Munich.

 

 

 

Rare Diseases - a therapeutic area specifically supported by INFRAFRONTIER

If you want to find out which kinds of specific resources and services INFRAFRONTIER provides for Rare Diseases: please click here!