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.

EU GDPR - we want to make sure you still want to hear from us!

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ERA-Net for Research Programmes on Rare Diseases
EU GDPR - we want to make sure you still want to hear from us!
Dear Colleagues,
As you may have heard, the new General Data Protection Regulation (GDPR) comes into effect May 25, 2018. Your privacy comes first!
As you are part of E-Rare community and has expressed interest in our calls, conferences and rare diseases related news OR registered into our "Looking for collaborations" database over the last years, we are sending this notice in order to inform you of E-Rare data processing activities in relation to your personal information.
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