Presentations ICORD 2011/12

Opening of Conference

Ichiro Kanazawa
(Professor, Dean, International University of Health and Welfare, former President of the Science Council of Japan, Local Chair of ICORD 2012, Japan)
Welcome Ichiro Kanazawa

Successful examples of clinical research in Rare Diseases

Jan-Inge Henter (ICORD Board member, Karolinska Institute, Karolinska University Hospital, Stockholm, Sweden)
Successful Academic Clinical Trials in Rare Diseases can be Valuable also for Common Diseases: Examples and Implementation

Access to and Reimbursement for Diagnosis and Therapy

Stefaan van Gool (University Hospital Gasthuisberg, Belgium)
Improved survival in the brain tumor malignant gliomas by successful academic clinical trials using tumor vaccination

Regulatory Aspects of Orphan Drugs

Agnes Saint-Raymond (EMA, UK)
Regulatory Aspects

Debra Lewis (FDA, USA)
Regulatory Aspects of Orphan Drugs – FDA Perspective

Marc Dunoyer (GSK Rare Disease, UK)
Vision for Creating New Therapies for Patients with Rare Diseases: View from Industry

Regional Pan-Pacific session – providing access to knowledge and collaboration

Naoko Yamamoto (Disease Control Division, Ministry of Health, Labour and Welfare, Japan)
Rare Disease Policies in Japan

Patient groups – Their connection and needs

John Forman (ICORD President-Elect and President NZORD, New Zealand Organization for Rare Disorders)
Presentation slides by John Forman

Tateo Itoh (Japan Patients Association, Japan)
Activities of patient groups in Japan

Supporting Product Development and Venture Capital

Ségolène Aymé (Orphanet, France)
Pre-competitive tools to speed up R&D for rare diseases: the Orphanet perspective

Jin Shiomura (Nobelpharma Company Ltd., Japan)
Development of rare disease treatment drugs is a collaborative project among patients, industry, academia and government

Ron Bartek, President (Friedreich’s Ataxia Research Foundation, USA)
Joint-Venture Philanthropy and Public-Private Partnership

International health policies for rare diseases and orphan drugs

Virginia Llera (ICORD President, elected 2012, and President GEISER Foundation, Argentina)
Reflections about rare diseases organizations and their impact on the policies. The ICORD experience in LA&C

Steve Groft (ICORD Board member, Director, Office of Rare Diseases, NIH, USA)
Presentation slides by Stephen Groft

John Forman (ICORD President-Elect and President NZORD, New Zealand Organization for Rare Disorders)
ICORD – Yukiwariso Declaration

The value of and promotion of basic research in RD – The future for international research collaboration

Kenji Hayashi (President, National Institute of Public Health, Japan)
Characteristics of a medical care program for specific diseases in Japan

Steve Groft (ICORD Board member, Director, Office of Rare Diseases, NIH, USA)
Translational Research Initiatives at the NIH, USA

It’s All about the Patients

Mark Krueger (Mark Krueger and Associates, USA)
Developing Advocacy

Virginia Beakes-Read (Global Regulatory Policy and Intelligence, Eisai, Inc, USA/Japan)
Global Environment for Development of Drugs for Rare Diseases

Selected Posters (Abstracts)

S Kobayashi et al (Ehime University, Japan)
Clinical Data Modeling for National Surveillance of Rare Diseases in Japan

K Ikeda et al (PRIP Tokyo, Japan)
Data Integration on Rare Disease and Orphan Drug with Open Source Drug Discovery Database

H Guillette et al (University of South Florida College of Medicine, USA)
PRISM: A Shared Resource for Global Data Standards in Patient Registries

Connolly et al (Children’s Hospital Boston, USA)
The Manton Center for Orphan Disease Research: Gene Discovery Core

D Gavhed et al (ICORD Secretariat, Karolinska Institute, Sweden)
A survey about rare diseases among Swedish General Practictioners (Abstract)

Closing Session

Yukiko Nishimura (ICORD Board member, Chief secretariat of ICORD2012, Tokyo University, Japan)
Why we wanted to host ICORD 2011/2012