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.

Events

External Event
Date of event : on 28 Feb 2019
28 February 2019 will be the twelfth int...
External Event
Date of event : on 20 Nov 2018
E-Rare Event
Date of event : on 7 Mar 2018
External Event
Date of event : on 23 Oct 2017
External Event
Date of event : on 24 Sep 2017

News

Research News
12 October 2018
The second Stakeholder Meeting of INFRAFRONTIER, t...
Research News
Posted on 28 August 2018
Research News
Posted on 12 July 2018
Research News
Posted on 12 July 2018
E-rare News
Posted on 18 May 2018

E-Rare 2012 - Created by Toussaint Biger