Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

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