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.

Corbel webinars

Corbel webinars

The CORBEL webinar series continues in June :

  • Genomics and clinical data at your fingertips with open-source software: tranSMART & cBioPortal on June 4 2019. There is a need for tools that integrate genomics and other molecular biology results with the phenotypic and clinical outcome data. This webinar presents an overview of such data tools that are used in the Dutch context.
  • Towards a GDPR Code of Conduct for Health Research: where are we today? on June 11 2019. The aim of the webinar is to present an update on the GDPR Code of Conduct for Health Research development.

For more information and to register, follow this link.

E-Rare 2012 - Created by Toussaint Biger