IRDiRC SEPTEMBER 2014 UPDATE

for Executive Committee, Scientific Committees, and Working Groups

IRDiRC Conference abstract submission has been extended to October 15, 2014.

New members of IRDiRC

 The European Organisation for Research and Treatment of Cancer (EORTC) has officially been accepted as a new member of IRDiRC. Dr Denis Lacombe will be its corresponding representative. Established in 1968, this non-governmental clinical research organization is dedicated to investigator driven clinical trials and translational research in cancer playing major roles in academic trials, including pediatric cancers, which are all rare. It consists of both a network and a coordinating scientific and operational infrastructure based in Brussels, Belgium.

IRDiRC new documents

• Executive Committee: report of the teleconference held on June 16, 2014. 

 • Diagnostics Scientific Committee: report of the teleconference held on September 2, 2014. 

 • Working Group on Ethics and Governance: report of the teleconference held on July 3, 2014. 

• Working Group on Genome/Phenome: report of the teleconference held on July 18, 2014.

• Working Group on Ontologies and Rare Disease Prioritization: report of the teleconference held on July 21, 2014.

Upcoming IRDiRC meetings

October 2, 2014: teleconference of the Executive Committee

October 6, 2014: teleconference of the Therapies Scientific Committee

October 7, 2014: teleconference of the Diagnostics Scientific Committee

October 13, 2014: teleconference of the Working Group on Sequencing

October 27, 2014: teleconference of the Working Group on Biomarkers for Disease Progression and Therapy Response

 November 6, 2014: Executive Committee meeting in Shenzhen, China

News published on the website

• The FDA issues a strategic plan to accelerate the development of therapies for children with rare diseases.

Optimizing research on rare diseases through the RD-Connect platform.

Launch of the Open Journal of Bioresources.

BBMRI-ERIC: the European Research Infrastructure Consortium to harmonize biobanking and boost research across Europe.

NIH’s Rare Diseases Clinical Research Network contributes towards improving research and orphan medicinal products.

The Rare Cancer Network: purpose, achievements and goals.

• IRDiRC is now acknowledged as contributing to the Framework for Responsible Sharing of Genomic and Health-Related Data of the Global Alliance for Genomics and Health.

IRDiRC related calls

• The National Institute for Health Research (NIHR, UK) has launched a call on Improving the mental health of children and young people with long term conditions.

Website updates

 • The IRDiRC sessions at conferences section has been updated with the addition of two sessions about IRDiRC during the IXth ICORD 2014 and the Rare Diseases and Orphan Drug Development Initiatives in India Conference.

 • The IRDiRC in the news section has been updated with the addition of one article mentioning IRDiRC from GacetaMedica.com

 The Scientific Committees meetings section and the Working Groups meetings section have been redesigned.

New selected reports and policy documents

• The European Commission implementation report on the Commission communication on rare diseases is now available.

• The National Institutes of Health (NIH, USA) Rare Diseases Clinical Research Network’s report on its organization and its approach to observational research and health outcomes research is now available.

Other news

• IRDiRC Recommended’ logo has been created.

Sophie Höhn, Communication manager, IRDiRC Scientific Secretariat, IRDiRC, Plateforme Maladies Rares / Rare Disease Platform, 96 rue Didot, 75014 PARIS, FRANCE, Tel: +33 1 56 53 81 37, Fax: +33 1 56 53 81 38

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