Conferences & Workshops

IRDiRC Conferences

February 8-9, 20173rd IRDiRC Conference – Paris, France
The 3rd conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France, at the conference center of Université Pierre et Marie Curie (UPMC) Sorbonne Universités, Jussieu. Five years have passed since the initial launch of IRDiRC in 2011 and considerable advances have been made in rare diseases research. IRDiRC 2017 conference presents a unique opportunity to reflect upon this progress, confront barriers, and together, form new collaborations to take on challenges posed by rare diseases.
November 7-9, 20142nd IRDiRC Conference – Shenzhen, China
The 2nd IRDiRC Conference took place in Shenzhen, China, on 7-9 November 2014. Co-organized between IRDiRC and BGI, over 600 participants from Asia, Europe, North America and Australasia attended this successful meeting, including academics, researchers, clinicians, industry leaders, policy makers and patient advocates.

April 16-17, 20131st IRDiRC Conference – Dublin, Ireland
The first IRDiRC Conference was held in Dublin, Ireland on 16-17 April 2013 and was organized by the European Commission during the Irish Presidency of the European Union. The conference gathered stakeholders active in the rare disease area from across the globe. In addition to a top-level program taking stock of advances toward IRDiRC goals, it provided ample opportunities to network with the international rare disease community.

IRDiRC Partner Events

May 26-28, 2016The European Conference on Rare Diseases & Orphan Products (ECRD) – Edinburgh, UK

March 9-12, 20163rd International Congress on Research of Rare and Orphan Diseases- RE(ACT) – Barcelona, Spain

IRDiRC Workshops

December 8-9, 2016 – IRDiRC-GA4GH Privacy-Preserving Record Linking Task Force Workshop – Paris, France

November 16, 2016Data Mining and Repurposing Task Force Workshop – Barcelona, Spain

March 3, 2016Small Population Clinical Trials Task Force Workshop – London, UK

November 30, 2015Patient-Centered Outcome Measures Task Force Workshop – Paris, France

November 9-10, 2015GA4GH-IRDiRC Automatable Discovery and Access Task Force Workshop – Paris, France

October 7, 2015GA4GH-IRDiRC Matchmaker Exchange Task Force Workshop – Baltimore, USA

December 3, 2013Rare Genetic Diseases: Diagnosis and Discovery Workshop – Prague, Czech Republic

April 18-19, 2013The 2013 International Workshop on Rare Disease System for Pathogenicity Inference – Dublin, Ireland


IRDiRC Session at Conferences

April 3-7, 201613th International Congress of Human Genetics in 2016 (ICHG2016) – Kyoto, Japan

October 7-9, 2014IXth ICORD 2014 – Ede, The Netherlands

April 23, 2013200 New Therapies and Means to Diagnose Most Rare Diseases by 2020: Collaboration Towards Ambitious Goals – Chicago, USA


IRDiRC Presence at Conferences


June 19-22, 2017Bio International Convention – San Diego, USA

April 6, 2017Goed Gebruik Geneesmiddelen – Amsterdam, The Netherlands

April 5-7, 2017Genomics of Rare Disease – Cambridge, UK

March 20-21, 2017 – Integrating Research and Healthcare for Rare Diseases:
a structured cooperation with high community added value – Valletta, Malta

March 5-8, 2017Rare and Undiagnosed Diseases: Discovery and Models of Precision Therapy – Boston, USA

February 22-23, 20172nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies – Brussels, Belgium


November 30 – December 2, 2016TEDMED 2016 – Palm Springs, USA

November 24, 2016RareBestPractices Conference – Rome, Italy

November 15 – November 17, 2016World Orphan Drug Congress Europe 2016 – Brussels, Belgium

November 10-12, 2016Pontifical Council for Health Care Workers International Conference on NTDs & Rare Diseases – Vatican City, Italy

November 1-3, 2016World Life Sciences Congress – Beijing, China

October 19 – October 22, 2016ICORD 2016 – Cape Town, South Africa

October 18 – October 22, 2016ASHG 2016 – Vancouver, Canada

September 15, 2016NIHR Rare Diseases Translational Research Collaboration symposium – Cambridge, UK

June 29- July 1, 2016Orphan Drugs & Rare Diseases Global Congress 2015 Europe – London, UK

May 26-28, 2016European Congress of Rare Diseases (ECRD) 2016 – Edinburgh, Scotland, UK

May 4-7, 2016American Society for Gene and Cell Therapy – Washington, USA

April 28-30, 2016Regenerative Medicine: Progress and its Cultural Impact – Vatican City, Italy

April 20-22, 2016World Orphan Drug Congress USA – Washington, USA

April 13-15, 2016Genomics of Rare Diseases: Beyond the Exome Conference – Hinxton, UK

April 3-7, 2016International Congress of Human Genetics – Kyoto, Japan

February 19-20, 2016International Undiagnosed Disease Program – Vienna, Austria


December 7-8, 2015Health Economics Global Congress 2015 Europe – London, UK

November 26-27, 2015The Eurobiomed meeting for rare diseases (RARE2015) – Montpellier, France

November 11-13, 2015World Orphan Drug Congress – Geneva, Switzerland

November 8-10, 2015Global Genomic Medicine Collaborative meeting (G2MC) – Singapore, Singapore

October 22-23, 2015Workshop on Research in Rare Diseases – Santa Cruz de Tenerif, Spain

October 15-16, 2015Xth Annual ICORD Meeting – Mexico City, Mexico

October 13-14, 2015Discoveries & Innovations on Orphan Drugs – Mexico City, Mexico

October 6-10, 2015ASHG 2015 – Baltimore, USA

September 24-26, 2015 – 3rd Ottawa International Conference on Neuromuscular Biology, Disease and Therapy – Ottawa, Canada

September 23-26, 2015The 2nd Zebrafish for Personalised Medicine Conference – Toronto, Canada

September 15, 2015EUCERD Joint Action Final Conference – Luxembourg City, Luxembourg

August 23-26, 201536th Annual Conference of the International Society for Clinical Biostatistics – Utrecht, The Netherlands

August 13-14, 20151st Australasian Undiagnosed Disease Program (UDP) Workshop – Perth, Australia

July 2-6, 2015 Rare diseases crossing borders together – Bialobrzegi, Poland

June 29 – July 1, 2015 Orphan Drugs & Rare Diseases Global Congress 2015 Europe – London, UK

June 28 – July 2, 2015 The 9th European Zebrafish Meeting – Oslo, Norway

June 9-11, 2015 The Global Alliance for Genomics and Health 3rd Plenary Meeting – Leiden, The Netherlands

June 6-9, 2015 The European Human Genetics Conference 2015 (ESHG 2015) – Glasgow, UK

June 2, 2015 EU-LAC Health Conference – Brussels, Belgium

May 13-16, 2015 ASGCT 18th Annual Meeting – (Education Session 134) – New Orleans, USA

April 22, 2015Genotranslation: Interpretation of Genome Data in Diagnostics – Prague, Czech Republic

March 20, 2015 – Raising Awareness of Rare Diseases – Hyderabad, India

March 5-7, 2015CORD Rare Disease Day 2015 Conference & Gala – Ottawa, Canada


November 12-14, 2014World Orphan Drug Congress Europe 2014 – Brussels, Belgium

November 4-5, 2014TREAT-NMD Global Data Oversight Committee Meeting – Leiden, The Netherlands

November 1-3, 2014Clinical Information Modeling Initiative – Amsterdam, The Netherlands

October 31, 2014International Conference ‘Rare Diseases: Europe’s Challenges’ – Rome, Italy

October 30, 2014E-Rare Symposium – Rome, Italy

October 29, 2014Research Infrastructures to Boost R&D in the Field of Rare Diseases – Fundación ARECES-VHIR, Madrid, Spain

September 29-30, 2014 – International Conference on Rare and Undiagnosed Diseases – Rome, Italy

September 18-19, 2014Rare Diseases and Orphan Drug Development Initiatives in India: Establishing a National Plan for Rare Diseases and Orphan Drugs – Hyderabad, India

June 23, 2014European Reference Network Conference – Brussels, Belgium

June 18, 2014DIA 2014 50th Annual Meeting – San Diego, USA

June 12, 2014Global Health Policy Forum – Brussels, Belgium

June 11, 2014IRDiRC: Fostering International Collaboration to Produce New Rare Disease Diagnostics and Therapies – Barcelona, Spain

June 10, 2014ICCG 2014 Conference – Bethesda, USA

May 30, 2014 – IV Jornada del Grupo de Enfermedades Minoritarias del Adulto: de los Aspectos Básicos a las Unidades Expertas – Barcelona, Spain

May 9, 20147th European Conference on Rare Diseases and Orphan Products – Berlin, Germany

March 10, 2014Grant Frameworks: Situation in Europe and IRDiRC – London, UK

February 26-27, 2014EU-LAC Health “2nd Roadmapping Workshop” – Madrid, Spain

February 23-26, 2014 – Joint Annual Meeting EURenOmics, NeurOmics, RD-Connect – Heidelberg, Germany

January 20-22, 2014E-RARE 2014: Scientific Meeting & Strategic Workshop – Athens, Greece

January 6-7, 2014FDA Public Workshop: Complex Issues in Developing Drug and Biological Products for Rare Diseases – Silver Spring, USA


November 14-15, 2013World Orphan Drug Congress – Geneva, Switzerland

November 10-12, 2013International Human Epigenome Consortium Annual Meeting – Berlin, Germany

October 31 – November 2, 20138th International Conference on Rare Diseases and Orphan Drugs – Saint Petersburg, Russia

October 22-26, 2013American Society of Human Genetics 2013 – Boston, USA