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.

PedCRIN call for multinational clinical studies in children and neonates

PedCRIN call for multinational clinical studies in children and neonates

ECRIN has launched a call for pilot clinical studies to receive trial management support from the Paediatric Clinical Research Infrastructure Network (PedCRIN) project. The goal is to support the multinational extension of paediatric studies on medicinal products having already secured funding in the coordinating country. The 18 member countries of the PedCRIN consortium are eligible to apply.

Children are still an understudied patient population. Clinical studies are needed to generate evidence supporting medical practice in children and neonates, and international cooperation is critical to obtain rapid and robust results optimizing healthcare strategies. However, conducting multinational paediatric clinical studies requires adequate infrastructure. The PedCRIN project is funded by the European Commission to upgrade the ECRIN infrastructure, through the development of a paediatric module.

The present call for application is intended to select, based on scientific excellence and evidence for feasibility, multi-national investigator-initiated paediatric or neonatal interventional clinical studies on medicinal products. The funding of the study should be already secured in the coordinating country, including the study coordination tasks (study design, protocol development, statistical plan and analysis, data management, safety management, general coordination). The PedCRIN funding will therefore be used to support study management tasks in countries other than the coordinating country3, enabling multinational patient recruitment.

Deadline for application: 2nd May 2017

For more information, see the call page

E-Rare 2012 - Created by Toussaint Biger