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.

For more information, check this website.


PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality. The objective is to develop processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue with regulators and HTA bodies. Share your opinion and experience on patient engagement NOW! Learn more HERE


The CORBEL Open Call invites researchers to apply to access technologies and services from more than 20 facilities from 10 different research infrastructures across Europe.
Learn more HERE


The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. See the publication HERE.

CORBEL 1st Open Call for Research Projects

CORBEL 1st Open Call for Research Projects

CORBEL seeks to harmonise access to European research infrastructures joining their various expertise across the range of life science disciplines. This facilitated access is of particular relevance for advanced interdisciplinary research projects, which could highly benefit from the integration of several specialist services and technologies such as biobanking, curated databases, systems biology, mouse mutant phenotyping, marine model organisms, advanced imaging technologies, high-throughput screening or structural biology.

The CORBEL partners now launch an Open Call and thereby offer to all academic and industrial scientists in Europe the chance to accelerate their research project. Through defined pipelines, called Access Tracks, the services of more than 15 CORBEL partner institutes from 8 participating research infrastructures, including BBMRI, will be made accessible to interested scientists. The intention is to provide access to multiple research infrastructure services and benefit from user feedback in order to improve, where transitions between infrastructures are not as smooth as desirable.

Successful applicants will have the unique opportunity to access multiple research infrastructures with just one application. Available services are grouped into four different Access Tracks:
1) Genotype-to-Phenotype analysis
2) Pharmacology for safer drugs/ chemical products
3) Structure-function analysis of large protein complexes
4) Marine Metazoan Developmental Models

Proposal submission for the 1st CORBEL Open Call for research projects will open 5 October, 2016.

For more information, please visit the project website

E-Rare 2012 - Created by Toussaint Biger