North American edition of the RE(ACT) Congress 2019 to be held at the Sheraton Center Toronto Hotel in Toronto, Canada, from May 8-11 2019. This 5th edition, the first to be held in North America will include sessions on clinical trials and registries, generalizable rare disease therapeutic approaches, gene editing, cell & gene therapy, stem cells, genetically modified cell therapies/clinical applications of gene therapies indigenous populations and rare diseases, and patient-focused drug development. REGISTER NOW! 

The European Joint Programme on Rare Diseases (EJP RD), which is the successor of E-Rare launches the Joint Transnational Call 2019. The call will  open officially in December. This year projects should focus on accelerated diagnosis and/or exploration of disease progression and mechanisms of rare diseases. More info under

28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

More information, HERE.

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)

E-Rare 2012 - Created by Toussaint Biger