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.

E-Rare SYMPOSIUM

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ERA-Net for Research Programmes on Rare Diseases
E-Rare SYMPOSIUM

As a part of its programme the E-Rare Consortium is organizing the special Symposium dedicated to collaboration in rare diseases research. The meeting will take place on the 30 of October 2014 at Casa dell'Aviatore in Rome, Italy.

The event will present a perfect occasion to gather rare diseases stakeholders: funders, researchers, patients’ organizations and regulatory bodies. 

Three symposium sessions will give an overview on how cooperation among funders, scientists and other relevant stakeholders helps in advancing rare diseases research with ultimate benefit to patients.

E-Rare will take this opportunity to present its future plans and activities in the context of the forthcoming "E-Rare-3" action.

The participation in the Symposium is FREE OF CHARGE. However the number of places being limited we encourage future participants to register as soon as possible.

More information about the event, detailed programme and link to registration can be found HERE or on our website www.e-rare.eu

Looking forward to seeing you in Rome!

E-Rare Consortium

 

 

www.e-rare.eu contact@erare.eu

E-Rare 2012 - Created by Toussaint Biger