8th-10th October, Herrenchiemsee, Germany
This meeting will bring together high-profile scientists from around the world and will focus on how basic science on rare diseases can have an impact for the development of novel therapeutic strategies.
RD-Connect co-ordinator Hanns Lochmüller is a confirmed speaker.
Further information can be found on the meeting website.
American Society of Human Genetics (ASHG) 2014
18th-22nd October, San Diego, California
The American Society of Human Genetics Annual Meeting is held each fall in a major U.S. or Canadian city and attracts over 6,500 scientific attendees, including many RD-Connect partners, plus almost 250 exhibiting companies, which makes it the world’s largest gathering of professionals working in human genetic .
Look out for RD-Connect partner, Paul Flicek (European Bioinformatics Inst, Cambridge, UK) who will be moderating the 'Cloudy with a Chance of Big Data' session, and RD-Connect Scientific Advisory Board member, Peter Robinson, (Charite-Universitatsmedizin, Berlin, Germany) who will be moderating the session 'Statistical Methods for Population Based Studies' on Monday 20th October.
Further information can be found on the conference website.
2nd International Rare Diseases Research Consortium (IRDiRC) Conference
7th-9th November, Shenzhen, China
IRDiRC is a global grouping of medical research funders, charities and pharma who have come together as a consortium to foster international collaboration and accelerate progress in rare disease research. Its goals are to deliver 200 new therapies for rare diseases and the means to diagnose most rare diseases by the year 2020. RD-Connect was one of the EU's first projects to be funded under the IRDiRC banner.
The 2nd IRDiRC conference aims to raise awareness of the topic of rare diseases around the world and to foster international collaborations involving Chinese researchers and clinicians. It will provide an unmissable opportunity to network with different rare disease communities from Europe, North and South America, Africa and Asia-Pacific. It is hoped that this will encourage and motivate investment of research and social resources in the field of rare diseases, to ultimately improve the diagnosis, treatment and care of patients and their families.
The following RD-Connect partners and associated partners have been confirmed as speakers during this three day event: Ségolène Aymé, Mathew Bellgard, Kym Boycott and Michael Brudno.
Further information can be found on the conference website.
III International EPIRARE workshop - Rare disease and orphan drug registries
24th-25th November, Rome, Italy
Patient registries are key tools in rare disease research and are now the subject of unprecedented popularity in translational research and of extensive policy actions. The III International EPIRARE workshop, organised by RD-Connect partner and registries work package leader Domenica Taruscio.
This workshop will cover the following topics:
• the contribution of registration activities to recent advancements in the natural history, epidemiology and pathogenesis of rare diseases as well as patient care and quality of life.
• practical and innovative applications of registries, such as recruitment of patients in clinical trials, social and health service planning, patients’ support networks and integration with other initiatives, such as biobanks and databases for genomic and phenomic analysis.
• lessons learned in the management of RD registries, e.g. regarding financial sustainability, quality assurance, ethical issues and patients’ confidence, data protection, ownership and accessibility, as well as patients’ contribution, involvement and advocacy initiatives.
• the impact of e-health initiatives, new communication technologies and social networks.
• increasing the visibility of RD patient registries and databases within and beyond the scientific community and promoting the debate and the interaction among the many stakeholders of patient registration activities.
The abstract submission deadline is 12th October 2014
Further information can be found on the workshop hompage.