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.

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.
E-Rare collects and processes personal information you provided. This may include name, contact details, function, details of your professional experience and information about your current and past interactions with E-Rare. We process this information in light of our legitimate interests, namely to maintain and administer our relationship with you through our newsletter and inform you about forthcoming funding opportunities for rare diseases researchers, relevant events and important issues related to rare disases. Altogether you receive our newsletter no more than four times a year.  
The "Looking for collaborations" database is available directly from E-Rare website only to the registred persons. The sole purpose of this module is to provide opportunity to the registred members to find potential collaborators/partners for their research projects. Each new subscription is verified and accepted manually. The access to the database is protected and the information secured. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we have put in place appropriate physical, electronic, and managerial procedures to safeguard and secure the information subscribers provide in the "Looking for collaborations" module. The contact between members of the "Looking for collaborations" database is allowed only through secured form and the e-mail addresses remain confidential.
We hope you enjoy our newsletter and "Looking for collaborations" module. However, you have a right to oppose our collection and use of your personal information.
If you wish to remove your profile from the "Looking for collaborations" module, please contact us at:
For our newsletter you can simply unsubscribe by clicking the "unsubscribe" link below.
Thank you!
E-Rare Team

E-Rare 2012 - Created by Toussaint Biger