ICORD 2014 Ede

IX ICORD Annual Meeting – The Societal Value of Prevention, Diagnosis and Treatments of Rare Diseases

On behalf of the Organizing and Program Committee we thank all ICORD members and all who attended the IX Annual Meeting in Ede, The Netherlands. We had the privilege to meet representatives from 25 countries in Latin America, Asia, Pacific, North America and Europe who enriched our Annual Meeting by providing interesting ideas and constructive discussion. We hope that new collaborations were initiated during the conference and that existing collaborators had the possibility to meet and discuss during the inspiring days in Ede.

We also would like to thank the Dutch Medicines Day (FIGON DMD) and ZonMw who provided the opportunities to interact globally.

The ICORD Secretariat


The conference report summarizes the ICORD Annual Meeting in Ede in 19 pages, including photos.


The 9th ICORD Annual Meeting was held in Ede, the Netherlands on 7-9 October, 2014.

The conference program, see below, included invited speakers and authors of a selection of submitted abstracts from many countries and continents, all devoted to the field of rare diseases and orphan drugs, and joint sessions with representatives from different institutions in the Netherlands.

ICORD 2014 Conference Program


Approved abstracts have been published in Rare Diseases and Orphan Drugs and late abstracts will be published in a supplement later this year. Presentations from the meeting are available here.


Chairman: Virginia A. Llera, ICORD President, Argentina

Strategic and Planning Committee: Manuel Posada, ICORD secretary, Spain; Domenica Taruscio, ICORD Past-president, Italy; John Forman, ICORD President-elect, New Zealand; Steve Groft, ICORD Board member, USA

Local Organizers: Sonja van Weely and Remco de Vrueh

Program Committee: Domenica Taruscio, Italy; Stephen Groft, USA; John Forman, New Zealand; Manuel Posada, Spain; Désirée Gavhed, Sweden; Timothy Cote, USA; Marlene Haffner, USA; Yukiko Nishimura, Japan

Conference Organization Coordination: ICORD Secretariat, Stockholm, Sweden

Working Groups Coordination: Désirée Gavhed, ICORD Secretariat, Sweden

Abstracts: Georgi Iskrov, Bulgaria

Sponsorship affairs: Emilio Roldán, Argentina