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 Newsletter November 2014

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ERA-Net for Research Programmes on Rare Diseases
E-Rare Newsletter November 2014


The ERA-Net “E-Rare” for research programmes on rare diseases has been extended to a third phase “E-Rare-3” (2014-2019) to further help in coordinating the research efforts of European countries in the field of rare diseases and implement the objectives of International Rare Disease Research Consortium (IRDiRC).

On the 15th of December 2014 E-Rare intend to open the seventh E-Rare joint call for funding multilateral research projects on rare diseases (JTC 2015) together with the European Commission (EC) under the ERA-Net co-fund mechanism.

The call is expected to be opened simultaneously by the parties in their respective countries. The following 17 countries (23 funding agencies) intend to participate in this call: Austria, Belgium (Flanders and French speaking community), Canada (including Québec), France, Germany, Greece, Hungary, Israel, Italy, Latvia, Poland, Portugal, Romania, Spain, Switzerland, The Netherlands and Turkey.

The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach.

Projects shall involve a group of rare diseases or a single rare disease following the European definition (a seriously debilitating and/or life-threatening disease affecting not more than 5 in 10.000 people in EU, EU associated states and Canada).

For more information, details of the topic, elegibility criteria and timeline click HERE or find it on our website www.e-rare.eu

Please note that the content of the call described in the pre-announcement may be subject to changes and is not legally binding to the funding organizations.

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

E-Rare 2012 - Created by Toussaint Biger