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.

Invitation to attend the 2nd INFRAFRONTIER / IMPC Stakeholder Meeting

Invitation to attend the 2nd INFRAFRONTIER / IMPC Stakeholder Meeting

The second Stakeholder Meeting of INFRAFRONTIER, the European Research Infrastructure for phenotyping and archiving of model mammalian genomes, will be jointly organized with the International Mouse Phenotyping Consortium (IMPC). Thematic focus of the meeting is on advancing Rare Disease research and gene therapy applications with animal models.

It will take place on December 3rd-4th at the Hilton Park Hotel in Munich (Germany).

 

Please find the Program details here.
You can register
here.

The meeting is free of charge including accommodation; participants just have to come to Munich.

 


 

 

E-Rare 2012 - Created by Toussaint Biger