The European Joint Programme on Rare Diseases (EJP RD) has published the pre-announcement for the Joint Transnational Call 2020. This call is for proposals on "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases".

For more information please visit the EJP RD website: http://www.ejprarediseases.org/index.php/joint-transnational-calls/

Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

JRC EU RD Platform releases the Set of Common Data Elements for RD Registration

JRC EU RD Platform releases the Set of Common Data Elements for RD Registration

The European Commission's Joint Research Centre (DG JRC), together with DG SANTE, is developing the EU Rare Diseases Registries Platform. The Platform aims to cope with the enormous fragmentation of RD data contained in RD patient registries across Europe by promoting EU-level standards for data collection and interoperability tools for RDs data exchanges. This will support knowledge generation on RD and will facilitate epidemiological, clinical, translational, pharmacological and other studies, including research, at European level.
 
According to the needs expressed by stakeholders, the first important building block for the EU RD Platform is the "Set of Common Data Elements for RD Registration", which has just been released and is the result of a dedicated Working Group facilitated by the JRC and composed of experts from projects related to common data sets: EUCERD Joint Action, EPIRARE and RD-Connect, as well as the JRC's EU RD Platform team. This Set is recommended as a constitutive element for all RD registries in Europe. This first step towards interoperability of registries is being offered to the European Reference Network's (ERNs) existing registries and registries under development and to all other RD registries at national, regional, local level in the Member States, to researchers and patient organisations thus covering the whole range of the EU RD Platform's stakeholders.

You can download this document HERE
 
The JRC will organise training sessions on the use and implementation of the "Set of Common Data Elements" and the interoperability tools under development (more information will come) for all interested RD Registries.

If you are interested please send us the name(s) of any persons in existing registries or who are planning to set up new registries who would be interested in the training courses.

You can contact us at: erarecoord(at)agencerecherche.fr

E-Rare 2012 - Created by Toussaint Biger