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.

EMA consultation on the proposal of a collaboration framework with Academia

EMA consultation on the proposal of a collaboration framework with Academia

The EMA calls for Academia participation! The European Medicines Agency, in order to implement the strategic priority of establishing a greater collaboration with Academia, is initiating a consultation process with the following objectives:

1.    explore opportunities  to better support  Academia in generating new medicines that meet regulatory standards;
2.    channel Academia’s advanced knowledge into the regulatory environment;
3.    assess the degree of awareness among Academics of the existing activities and incentives provided by regulators to support medicine development;
4.    refine regulators’ understanding  of Academia’s needs and expectations and develop a methodology for collaboration.

You are invited to participate to this process by answering a brief questionnaire that also provides space for comments and suggestions.
Please click on the following link to access the questionnaire: https://www.surveymonkey.co.uk/r/EMA_Academia_consultation

Your input is very valuable and will contribute to the achievement of the above objectives. Before you start answering the questionnaire, we recommend you to read the brief background paper that provides an overview of the issues at stake.
The questionnaire is composed of 12 questions and it should take approximately 10-15 minutes to complete.

The deadline for completing the on-line questionnaire is 15 April 2016.

If you would like to send to EMA a separate written contribution, please send it to Academia-consultation[at]ema.europa.eu specifying if it is a personal contribution or on behalf of your Organisation.

The data and contributions collected will be analysed and the results will be communicated to the respondents who will have identified themselves during this initial consultation.

E-Rare 2012 - Created by Toussaint Biger