News- EIKRA – Page 45

Task Force Opening: Clinical Research Networks for Rare Diseases

Posted onApril 25, 2019
IRDiRC

The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, […]

Durhane Wong Rieger elected as Chair of the Patient Advocacy Constituent Committee

Posted onApril 6, 2019
IRDiRC

We are pleased to announce the election of Dr Durhane Wong Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD), as the Chair of the Patient Advocacy […]

Task Force Openning

Posted onApril 6, 2019
IRDiRC, Non classé

The Diagnostic Scientific Committee (DSC) is establishing a Task Force on to address barriers to the diagnosis of rare diseases for Indigenous peoples, so as to help address critical areas that will […]

17 Mar
2019

IRDiRC supports the call for a moratorium on hereditary genome editing

Non classé

“We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children”. […]

28 Feb
2019

Rare Disease Day 2019!

Non classé

The International Rare Diseases Research Consortium support Rare Disease Day 2019! The recent elected Chair and Vice Chair of IRDiRC, Dr Lucia Monaco and Dr David Pearce, and the accompanying […]