Upcoming Event

IX Annual meeting of ICORD 2014

- The Societal value of Prevention, Diagnosis and Treatments of Rare Diseases

The Netherlands Windmills


Invitation from the President

On behalf of the Organizing Committee, I invite all ICORD members and all who are interested in rare diseases and orphan drugs research and policies to attend the IXth Conference, which will be held October 7-9, 2014, in Ede, The Netherlands. We are very pleased to be able to host everyone to the charming city of Ede and back to the European Community since our last meeting in Rome 2009. The recent past events in South America, Asian-Pacific and Eastern Europe has enriched our association, achieving more globalization, understanding of world-wide needs and enlarging the visions and contacts of our members. Indeed, rare diseases and orphan drugs are undoubtedly global issues that find in ICORD a unique and transparent forum for discussions, presentations of ideas and collaboration. 

In parallel, our recent group editions of ICORD position (Acta Pediatrica 2012); and the Proceedings of the past meeting at Russia (published in Rare Diseases and Orphan Drugs, March 2014) provide spaces in which the researcher and policy makers can uphold widely their achievements and ideas.

The yet traditional Working Groups provides opportunities for researchers, regulatory, industry and patient organizations groups to express their particularities and develop join activities.

This year ICORD has been positioned in conjunction with the Dutch Medicines Day (FIGON DMD), and locally supported by ZonMw, providing more opportunities of interactions.

Therefore again, we welcome you to the central Netherlands.

Virginia Llera MD

ICORD President
GEISER Foundation President



The conference title “Societal value of Prevention, Diagnosis and Treatments of Rare Diseases”, enables participants to present a wide range of topics concerning medical, research, political, social, industrial, and economical aspects. Nevertheless the conference program will include a number of other specific topics and will be open for proposals and free presentations.

The 9th ICORD meeting will be held in conjunction with the Dutch Medicine Days 7-8 of October, with both joint sessions and separate ICORD sessions and open workgroup meetings. The 9th of October the programme is dedicated to ICORD only. The programme will include sessions with both invited speakers and free abstract presentations, see Abstract section below.

An Outline of the program will be published here soon.



Date: 7-9 October 2014; starting 9 am on the 7th October and ending at 16.00 pm on the 9th of October 2014.

Place: Ede, The Netherlands

Venue: Ree Horst Hotel (http://reehorst.nl/en/index.html), with good facilities, parking lots and communications.



Abstracts have been received on the following topics:

- Early and accurate diagnosis including Undiagnosed disorders

- Neonatal  screening

- Improvements of primary prevention

- Improvements of clinical care including clinical guidelines

- Cross-border health care, Telemedicine

- Orphan medical products and their effectiveness

- Registries and Biobanks

- Patient views of the societal value

- Clinical, Translational and Social research on Rare Diseases

- Worldwide collaboration

- Regulatory questions and concerns

- Other relevant topics



A wide option for sponsorship activities will be offered upon request. ICORD is a non-profit organization; the program, designations of speakers and activities being free of conflict of interest. Please contact the ICORD Secretariat email: desiree.gavhed@ki.se


Virginia A. Llera, ICORD President, Argentina

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

Local Organizers:
Sonja van Weely
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

Working Groups Coordination:
Désirée Gavhed, ICORD Secretariat, Sweden

Georgi Iskrov, Bulgaria


Updates about the conference will be posted here.
Questions about the Conference? Please email icord@karolinska.se


Updated: September 28, 2014